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"Active Ageing in the community, by the community, for the community."

Today, 1 in 10 seniors who are aged 60 and above in Singapore have  dementia . With increased life expectancy and a rapidly ageing population, dementia cases are expected to triple by 2030. It is important to raise awareness on active ageing and focus efforts on dementia prevention.

The programme was designed to encourage people to engage in A ctive Ageing Singapore , no matter their age. As we live, we age. Healthy ageing is a lifestyle we can start cultivating from today. The community programme is rooted in research and designed to delay cognitive deterioration. Furthermore, it can help to instil a resilient mind and increase socialization amongst seniors. All in all, through the activities, we aim to delay the onset of dementia and improve the senior’s quality of life.

The ecology of resilience is exemplified in active ageing programmes, where we build a closely-knitted community with our respective community partners that engage participants, volunteers and trainers. With a self-supporting programme structure, a sustained run of AWE activities is ensured.

For seniors, retirees and caregivers, aged 40 & above, we welcome you to join us as a participant or Volunteer for the community active ageing programmes.

For those aged below 40, join us as a volunteer to make a difference in your community. Drop us an email at [email protected] if you require more information or further assistance.

Available Active Ageing Activities

Health Education

Physical Exercise

Mindfulness Practice

Art and Music Reminiscence

Horticulture

A Message From

Prof Kua Ee Heok

Tan Geok Yin Professor in Psychiatry and Neuroscience, National University Singapore (NUS) Emeritus Consultant, National University Hospital (NUH) Vice Chairman, Mind Science Centre

The  AWE programme  is the first dementia prevention programme in Asia and was selected for presentation at the World Congress of Psychiatry 2022. The AWE programme aims to instil a resilient mind and increase socialisation among seniors to prevent dementia and improve their quality of life. It is currently available in 8 centres across Singapore and will continue to expand in the near future.

A/Prof Rathi Mahendran

Senior Consultant Psychiatrist, Dept of Psychological Medicine, Yong Loo Lin School of Medicine, National University of Singapore (NUS) Advisory Board, Mind Science Centre

The AWE program is based on research findings from several intervention studies such as Mindful Awareness Practice, Art Therapy, Music Reminiscence Activity, and Horticultural Therapy amongst others. They were evaluated and translated into activities that provide cognitive stimulation and opportunities for socialisation and engagement. Everyone benefits from participation, from the participants to the trainers and program facilitators.

A/Prof Goh Lee Gan

Senior Consultant, Department of Family Medicine, National University Health System (NUHS) Associate Professor, Division of Family Medicine, Yong Loo Lin School of Medicine, National University of Singapore (NUS)

DEWSS (diet, exercise, weight control, smoking cessation, and moderation in spirits) is known to reduce the risk of dementia and physical disability. We first launched a health education programme as part of the Dementia Prevention Programme (DPP), a community outreach of NUH Department of Psychological Medicine and PA. With support from donors and interest by community partners, the programme has evolved into the AWE programme which encompasses 4 core items: health education, mindfulness, music reminiscence, and group exercise programme. Throughout the years, that list has expanded to include horticulture therapy and choral singing. As our research continues, we hope to expand the list even further to impact more people in our society.

The Starting Point – Community Active Ageing Programmes for Dementia Prevention

Professor Kua Ee Heok, Professor Goh Lee Gan and Associate Professor Rathi Mahendran sparked the idea of using research to guide a community programme that helps the seniors engage with  active ageing in Singapore  and possibly, even prevent dementia.

Prof Kua is the Tan Geok Yin Professor in Psychiatry and Neuroscience at the National University of Singapore.

After gathering a group of like-minded researchers and generous philanthropists, they embarked on the idea to translate the then-ongoing Jurong Ageing Study (JAS) to a rolling community programme, called the  Dementia Prevention Programme  (DPP). To put it simply, the research will investigate the positive impact of various activities on the elderly’s cognitive health. The findings will direct the community programme to roll out actual activities with the community partners€.

The Research

Jurong Ageing Study is a 10-year comprehensive research initiated by Mind Science Centre. Its key research area involved investigating various cognitive stimulating activities for community-living seniors. Notably, some of the studies compared the cognitive improvements of elderly with mild  cognitive impairment . Generally, it was found that early psychosocial intervention with seniors may help to delay the deterioration of cognitive capabilities and reduce the incidence of depression and anxiety. With an improved quality of life through active ageing Singapore, seniors can embrace their golden age with a resilient mind. Beyond that, the family and society benefit from reduced burden of disease.

REBRANDING OF DPP - AGE WELL EVERYDAY PROGRAMME

During the early run of the Dementia Prevention Programme, the managing committee noticed the slow uptake of the programme by the community. It was found that seniors are concerned with the label of ‘Dementia’ and the social stigma associated with it.

As such, the DPP underwent a rebranding exercise to be relaunched as Age Well Everyday (AWE) Programme, encompassing the essence of the meaningful initiative.

Be a Volunteer with us!

• You are enthusiastic about active ageing and ready to share the knowledge with seniors, family and friends!
• You can speak English and/or Mandarin.
• You enjoy interacting with seniors.
• You are able to commit to regular activity schedules as planned by the respective community partners.

Our Community Partners

*Please note that some of the community partners have moved their activities online due to the current pandemic situation.

Couldn’t find a centre near you? Keep a lookout for this space as we are currently in the works to collaborate with more centres and expand our programme outreach to benefit more people.

Join us as a Participant!

For seniors and retirees looking for interesting activities to participate in as a pastime, this active ageing programme will be perfect for you! Participate in workshops that will keep you informed about new ways to enhance your physical and mental well-being, as guided by research. Form your own community friend group and enjoy the various planned initiatives by the community partners.

Ready to embark on an active ageing lifestyle? Approach any of our community partners to find out more about their activity schedule.

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More Believe Persons With Dementia Can Live Fulfilling Lives, Though Stigma Associated With The Condition Remains High

You are here.

Singapore, 12 May 2023 – The number of persons in Singapore living with dementia is expected to increase to 152,000 by 2030 [1] , with one in two admitting they feel less competent than they did before being diagnosed with the condition. This was established in a new nationwide study conducted by Singapore Management University (SMU) , in which 60 per cent of persons with dementia also say they are regarded as less competent than usual. Compared to findings of the initial SMU-led survey in 2019 , though, the percentage of persons with dementia who face rejection, loneliness and shame has dropped significantly from 72 per cent to 31 per cent.

This follow-up survey, similarly titled Remember.For.Me , was conducted between January and March 2023 by SMU Principal Lecturer of Statistics Rosie Ching and her 72 undergraduates . It was accomplished in partnership with Dementia Singapore , the country’s leading social service agency in dementia care, and with the support of the Agency for Integrated Care (AIC) .

More than 3,225 participants were interviewed - including persons with dementia, caregivers, and the general public - with the objective of gleaning further insight into the evolving attitudes and awareness surrounding dementia.

The survey though held two new elements. First, it evaluated the impact of the Covid-19 pandemic on the lives of people with dementia, which was rated as negative by almost 80 per cent of the respondents. Second, it assessed Singapore’s degree of dementia-friendliness, which more than 75 per cent rated as significantly less-than-friendly.

Tackling the Stigma

Predictably, the stigma associated with dementia remains prevalent. And those with no connection to the condition have in fact the highest average level. This is also interestingly higher than the average held by people with dementia, who are known to harbour some of the worst negative attitudes, with one in two feeling incompetent and embarrassed about their condition, citing stigma as the main reason.

Said Mr Jason Foo, CEO of Dementia Singapore : “Over the past few years, we have undertaken extensive efforts to reduce stigmatic perceptions towards persons with dementia and their caregivers, as well as cultivate a more understanding and accepting community. The findings from this survey do however underline key areas where more focused attention is needed. So, it is crucial that we continue to work with community partners and government agencies to strengthen the dementia care ecosystem, as we strive towards a truly dementia-friendly and inclusive society.”

Some of the more recent examples of the progress made to expand efforts, Mr Foo prompted, include the launch of AIC’s inaugural #DementiaFriendlySG campaign last November. It marked a combined total of over 200 NTUC FairPrice and Sheng Siong outlets being added as dementia Go-To Points (GTPs), bringing the total number of GTPs to over 550. Notably, more than 1,000 supermarket managers and supervisors have also undergone training in dementia awareness and the GTP briefing conducted by Dementia Singapore and AIC . The two agencies have since signed a memorandum of understanding that involves the alignment of core strategies, aimed at maximising efforts to tackle emerging needs.

Growing In Confidence

It is likewise reassuring to learn that more than eight in 10 Singaporeans today feel confident that persons with dementia can enjoy fulfilling lives. Furthermore, a notable 83 per cent are confident more can be done to improve their quality of life; this is almost 30 per cent higher than the average recorded in the 2019 survey. And even if 47 per cent noted their frustration with their lack of knowledge on how to support people with dementia, these findings only reinforce the need for persistent education and greater awareness of the condition and its unique challenges.

“The group of persons living with dementia will continue to grow in Singapore and we will need to meet their needs and aspirations. It is thus heartening to see that there has been a significant decrease in the sense of loneliness and rejection among people living with dementia. The increased support from the general public who want to do more to improve the lives of persons living with dementia is also encouraging. AIC will continue our efforts with our partners to increase awareness and inclusivity for persons living with dementia, and to support their caregivers as well. We want them and their caregivers to know that there is support from the community and government to enable them to live their lives to the fullest," shared Mr Tan Kwang Cheak, AIC’s CEO.

Said Ms Rosie Ching : “Four years after its inception, Remember.For.Me. has once again focused on a problem that many, including my students, deeply relate to; and I am very grateful for having them by my side through all the toil, sweat, and tears, through the months of surveying and statistical analysis. A significant number have connections to dementia in their own families. My own great-grandmother died of dementia in 1993, when I was a student, and her struggle in the years before her death is something I’ll never forget.

We feel privileged to have worked with Dementia Singapore in this original study, forging ahead with thousands of respondents across Singapore, in person, online, and via telephone. With my students’ generation as the caregivers of tomorrow, we hope the statistics uncovered will shed significant light on changes in perceptions of dementia in Singapore.”

KEY FINDINGS OF PRACTICAL IMPACT: Number of Survey Respondents

• Persons with Dementia: 32
• Caregivers of Persons with Dementia: 619
• General Public: 2,575
• Total: 3,226

1. Persons with Dementia: 60 per cent of persons with dementia encounter embarrassing situations, significantly more than the 28 per cent in 2019. 

• 60 per cent also say they are treated as less competent than usual, higher than the 56 per cent in 2019.
• 50 per cent of them say they also feel less competent than they did before having dementia.
• Compared to 2019 however, when they experienced more loneliness, shame and rejection, more people with dementia recently surveyed now face issues of embarrassment and feeling less competent.
• More than half of persons with dementia surveyed think their level of inclusion lies in the low range of 30 per cent or less, no different from that thought by the general public.

2. Caregivers for people with dementia:  Compared with 2019, there is an increase in the percentage of caregivers who feel disconnect from non-caregivers.  At least one in three encounter embarrassing situations while caring for their loved one with dementia. In addition, they feel a greater disconnect from non-caregivers and thus require more support. 

3. General Public: 72 per cent of the general public would avoid persons with dementia, a sharp rise compared to only 20 per cent in 2019.

• More than 65 per cent see them as less competent, up from 58 per cent in 2019; opinions which are strongly disagreed with by more than 92 per cent of primary and secondary caregivers of persons with dementia.
• Even so, a whopping 85 per cent say they want to do more to improve the lives of people living with dementia, a rise of almost thirty per cent from 2019.
• 79 per cent of the general public rate their knowledge of dementia as average or lower, compared to the 2019 survey in which 90 per cent gave it an “average” or “low” rating.
• Knowledge levels about dementia have risen significantly since 2019.
• Yet 47 per cent feel frustrated with not knowing how to help people with dementia, an increase from the 43 per cent registered four years ago.

4. Living in their family’s home is still the preferred choice of all respondents, but it is no longer a strong lead.

• There is a marked drop with 57 per cent of persons with dementia choosing this, compared to the 85 per cent registered in 2019.
• Also evident is a four-fold rise in those wanting to “live independently” and a two-fold rise in a preference for homes with specialised dementia care, even among caregivers and the general public.

5. Although the level of knowledge about dementia has risen marginally since 2019, overall, this remains lower than 50 per cent on average.

• Caregivers have gained much knowledge about dementia since 2019, when just over 50 per cent rated their knowledge level as average.
• This has improved with 43 per cent placing themselves in the high knowledge category; the percentage of secondary caregivers doing the same has more than tripled.
• Another notable improvement is the fact that 56 per cent of the general public now rate their level of knowledge about dementia as “average”, when in 2019, almost the same figure of 56 per cent gave their knowledge level a “low” rating.
• The top two reasons chosen for having a “low” level of knowledge of dementia were, “no family history” and “no outreach or education”, unchanged from 2019.

More education needed to increase awareness and a better understanding of dementia

The latest study did however reveal several considerable improvements for persons with dementia. The percentage of those who face rejection, loneliness and shame has dropped to 31 per cent (down from 72 per cent in 2019). There is less avoidance experienced and a smaller percentage (38 per cent) felt they were treated with less respect.

However, the level of inclusion experienced by people with dementia remains largely unchanged from 2019. More than half of them still think the level lies in the low range of 30 per cent, which is no different from sentiments expressed by the general public. 

The average knowledge level about dementia has risen since 2019 but remains lower than 50 per cent. It is encouraging that more than eight in 10 Singaporeans (80 per cent) think persons with dementia can enjoy life, and that 83 per cent think more can be done to improve their quality of life. This marks a rise of almost 30 per cent from 2019.

Less shame and avoidance in 2023

This new study revealed several significant improvements for persons with dementia from the 2019 findings. The percentage of those who face rejection, loneliness and shame has dropped from 72 per cent to 31 per cent.  There is also less avoidance experienced from others at 19 per cent, a large improvement from 56 per cent in 2019, whilst 38 per cent felt they were treated with less respect compared to 56 per cent in 2019.

Stigma towards dementia remains high

In measuring stigma levels associated with dementia, results are no different from the 2019 survey. Those with no connection to dementia have the highest average stigma level, even more negative than people with dementia who hold the worst negative attitudes towards themselves with more than one in two feeling incompetent and embarrassed about their condition, citing stigma as the main reason.

Based on these findings, males remain significantly more stigmatic towards dementia than females, while baby boomers (aged at least 70) are the most stigmatic, with Generation X, the generation of primary caregivers again the only age group with the lowest average stigma level. Race and religion played no role in the issue.

Even though at least 64 per cent of each profile think that persons with dementia are included in our everyday life, the level of inclusion is worth noting, which has stayed largely unchanged since 2019. More than half of persons with dementia still think their level of inclusion lies in the low range of 30 per cent, which is no different from that thought by the general public. Caregivers, both primary and secondary, are more optimistic and the higher a person’s stigma level toward dementia, the lower the average level of inclusion in everyday life, with a significantly negative correlation.

Knowledge levels of dementia remain low

Although the average knowledge level about dementia has risen since 2019, it remains lower than 50 per cent. Caregivers have gained in knowledge since 2019, when slightly more than 50 per cent rated themselves as just average. In 2023, this has more than doubled to 43 per cent placing themselves inside the high knowledge category, with secondary caregivers more than tripling. One outstanding shift is the 57.5 per cent of the general public rating their dementia knowledge as “average or higher” when in 2019, more than seven in 10 (72 per cent) rated dementia knowledge as “low”. The top two reasons chosen for “low” knowledge of dementia were “No family history” and “No outreach or education”, unchanged from 2019.

It is still encouraging that more than eight in 10 Singaporeans (80 per cent) think persons with dementia can still enjoy life and that 83 per cent think that more can be done to improve their quality of life. This marks a rise of almost 30 per cent from 2019. Interestingly, 47 per cent feel frustrated with not knowing how to help people with dementia, a slight increase from 43 per cent four years ago, but which reinforces the need for more dementia education and awareness.

The detailed survey results are available at http://www.screeningstatistics.com/remember

Student Quotes

YUAN Shuai, School of Accountancy:

In the past one semester, I have learnt far more than I expected, with the project about dementia, which my grandfather has been living with for five years. I really appreciate that I could work with Ms. Ching to improve the overall understanding and perspective of dementia in Singapore, which is truly meaningful to me.

Rachel Rei MACK, School of Business:

Remember.For.Me was a novel experience for me, a cause I feel strongly about since my own great-grandparents had it and now my grandparents have dementia.

SEE Chow Ye, School of Business:

Ms. Ching’s Remember.For.Me project enabled me to learn statistics through the engaging pedagogy, while greatly increasing my empathy for people living with dementia and the community supporting them.

GOH Zhi Xuan, School of Business:

I never realised the power of statistics until I took this class with Ms Ching. The real-life use of statistics while working for Dementia Singapore to uncover truth among people with dementia was truly meaningful and eye-opening. Ms Ching’s passion for statistics is contagious and truly enjoyable.

Joel LOW Ming Herng, School of Business:

STAT-X was a fulfilling experience seeing the work that we put in used to improve the lives of others. Ms Ching has put in lots of effort into a difficult topic like dementia, and it was exciting.

Fitrah Binte Mohamed AMIN, School of Social Sciences:

I have personal connections with dementia, which made Remember.For.Me all the more meaningful to me. It was incredibly fulfilling to study statistics while making a difference on something close to all of us.

[1] ‘Your Guide to Understanding Dementia' by HealthHub

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NTU launches centre to study how dementia develops in Asians

SINGAPORE - The Lee Kong Chian School of Medicine at Nanyang Technological University has launched a centre to study the changes in the brains of Asians before dementia sets in as well as find new strategies that can one day predict and delay the progression of the syndrome.

It is thus targeting people with suspected cognitive decline or mild cognitive impairment (MCI).

Singapore's director of medical services Kenneth Mak, the guest of honour at the launch of the Dementia Research Centre (Singapore), or DRCS, said in his speech that the centre aims to develop and validate novel biomarkers and new interventions for dementia in the Asian population.

In Singapore, one in 10 people aged 60 and above lives with the condition.

Associate Professor Mak also said the Ministry of Health adopts a multipronged approach to dementia care, which includes raising awareness of it, enhancing care capacity and capability in the community and hospitals, and supporting caregivers of people living with dementia.

Most of the patients here who have sought help are those with moderate to severe dementia.

Associate Professor Nagaendran Kandiah, director of the DRCS, said: "The challenge with treating dementia is that if it is not picked up early, you miss the boat. Once you lose brain cells, there is nothing we can do to reverse that."

He said that changes in the brain can occur as early as 30 years before one develops dementia, and about 80 per cent of the people with mild cognitive impairment - estimated at 250,000 people - will go on to develop dementia.

For this group, their risk of getting dementia rises by 10 per cent to 15 per cent every year.

"If you are able to diagnose people at this stage, then you will be in a better position to help them prevent dementia," he said.

Crucially, the centre aims to shed light on "Asian dementia" because of the biological factors unique to the Asian brain that increase the prevalence of dementia.

For instance, Asian patients are three times more likely than Caucasian patients to suffer from cerebral small vessel disease, which is a narrowing of the small blood vessels in the brain that then appear as white matter lesions. They can put one at increased risk of dementia and more rapid cognitive decline.

About 80 per cent of the patients at dementia clinics in Asia have white matter lesions.

Prof Kandiah also said that the prevalence of the APOE4 gene and the amyloid-beta gene, which are associated with Alzheimer's disease, is much lower in Asian patients, though in many international trials, the APOE4 gene is an inclusion criterion.

Research done by the DRCS has shown that in Asians, small vessel disease results in more brain shrinkage among those who do not have the APOE4 gene, which shows that novel strategies may be needed to manage Asian patients with dementia, he said.

Furthermore, one in three Asian patients has the tau protein in his brain, which is known to be a risk factor for dementia, but no evidence of any amyloid-beta protein.

Prof Kandiah, who was previously with the National Neuroscience Institute, said the dementia research centre has already recruited 67 out of 1,500 patients targeted for a five-year study. One of them is his patient, Ms Lena Wong, who is nearing 70 and keen to learn more about her mild cognitive impairment and contribute to the efforts to delay the onset of dementia in people like her.

Her forgetfulness became obvious to her more than a decade ago, but the doctor she saw told her that she had "normal signs of ageing". A few years ago, it reached a point when she would go shopping, pay and then leave without her groceries.

It "happened again and again", which prompted her to see a geriatrician and then Prof Kandiah.

At the research centre, participants will go through a cognitive assessment that will include state-of the-art blood tests to find brain proteins, specifically amyloid and tau, as well as a brain scan to look for brain shrinkage and the presence of white matter lesions. They will receive a free report eight weeks after their visit, which they can use for a discussion with their doctors.

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Volunteers’ experiences building relationships with long-term care residents who have advanced dementia

Healthcare volunteers make important contributions within healthcare settings, including long-term care. Although some studies conducted in long-term care have shown that volunteers contribute positively to the lives of people living with advanced dementia, others have raised questions about the potential for increasing volunteers’ involvement. The purpose of this study is to understand volunteers’ perspectives on their work and relationships with long-term care residents with advanced dementia. A total of 16 volunteers participated in semi-structured interviews about their experiences. Interview data were analyzed using an inductive approach to thematic analysis. In this analysis, a central concept, relationships in dementia care volunteering, enveloped four related themes: mutuality and empathy as the foundation for dementia care relationships with residents, family as the focus of volunteer relationships, relationships shaped by grief, and staff support for volunteer relationships. We conclude that in long-term care settings, volunteer roles and relationship networks are more robust than they are often imagined to be. We recommend that long-term care providers looking to engage volunteers consider training and supporting volunteers to cultivate relationships with residents, family, and staff; navigate experiences of loss; and be considered as members of dementia care teams.

The long-term care sector has been criticized for relying too heavily on a biomedical model of care that does not sufficiently address the significance of relationships among residents, staff, family members, and the community ( Sutherland et al., 2019 ). Recently, this critique has manifested in repeated calls for a more relationship-centered approach, which promotes mutually beneficial relationships between the person in need of care, their family members and friends, and paid care staff ( Beach et al., 2006 ; Rockwell, 2012 ). Relationship-centered care shifts the emphasis from the healthcare institution to family and community by enhancing communication, promoting an appreciation of the role of family and community in supporting residents, and fostering teamwork ( Barken & Lowndes, 2018 ).

Volunteers play a critical role in promoting a relational approach to care in long-term care settings. In some ways, this is a natural outcropping of volunteers’ own motivations, which include working with people, networking, and socializing ( Claxton-Oldfield et al., 2005 ; Tingvold & Førland, 2021 ). Volunteers typically experience their relationships as very rewarding and associated with positive feelings and increased empathy ( Greenwood et al., 2013 , 2018 ). They appreciate the opportunity to help others, meeting their needs, and making a difference in their lives ( Claxton-Oldfield & Claxton-Oldfield, 2012 ). The gratitude expressed by patients and families is personally satisfying to volunteers ( Claxton-Oldfield & Claxton-Oldfield, 2012 ).

The reported outcomes associated with healthcare volunteerism care are consistently positive ( Handy & Srinivasan, 2004 ). In long-term care contexts, over 60% of residents have dementia ( Canadian Institute for Health Information, n.d .). These residents continue to benefit from strong relationships, but also become more reliant on others to nurture these relationships ( Bramble et al., 2009 ; Brownie et al., 2014 ). Within long-term care, residents with dementia demonstrate higher levels of pleasure and interest when they are engaging with volunteers as compared to when they are alone ( Hunter et al., 2018 ). Families express appreciation for the social interaction that volunteers provide for long-term care residents when family members and staff are unavailable ( Piechniczek-Buczek et al., 2007 ). Long-term care staff, who speak of a lack of adequate time as a structural barrier to providing relational care ( Barken & Lowndes, 2018 ), also express appreciation for volunteers’ capacity to support residents’ social needs ( Hunter et al., 2018 ; Söderhamn et al., 2012 ). Most studies focus on relationships volunteers maintain with long-term care residents, giving less attention to relationships with family caregivers and staff, despite the multi-directional benefits of involving volunteers in the care of long-term care residents with advanced dementia (e.g., Hande et al., 2021 ).

Volunteer work with long-term care residents typically includes providing social ( Faulkner & Davies, 2005 ), emotional, and practical support ( Macvean et al., 2008 ). Volunteers develop a mutual sense of friendship with residents ( Malmedal et al., 2020 ), and develop valuable new skills, including skills specific to navigating relationships with people who have dementia ( Guerra et al., 2012 ). However, many long-term care residents have dementia, and some volunteers find cultivating relationships with residents who have dementia to be challenging. For example, volunteers may experience anxiety, perhaps expecting that working with individuals who have dementia will be difficult, and that problems are likely to arise ( Damianakis et al., 2007 ). First-time volunteers may be particularly likely to find themselves feeling less comfortable responding to the needs of residents with dementia ( Foong & Zhao, 2016 ) and that they may benefit from more structure, support, and training ( Hunter et al., 2018 ; Van der Ploeg et al., 2014 ). Furthermore, support, training, and a clear description of the volunteer role have been identified to be important factors in increasing volunteer retention and satisfaction ( Chung, 2009 ; Hurst et al., 2019 ; McDonnell et al., 2014 ).

Beyond building relationships with people who have dementia, volunteers in long-term care settings also often find themselves interacting with family caregivers. Relationships between volunteers and family caregivers have received very limited attention in research. In the few studies that do describe these relationships, volunteers have been described as having an “in-between” role where they are not quite a friend of the resident, and not quite a staff member either ( Weeks et al., 2008 ). This less defined, in-between role seems to allow volunteers to act as an intermediary between family members and staff when needed by either party, promoting more effective communication and continuity of care ( Hande et al., 2021 ). Current research also suggests that there are reciprocal benefits in the relationships between volunteers and family caregivers. For example, volunteers support families by supplementing psychosocial care ( Piechniczek-Buczek et al., 2007 ). Additionally, volunteers who speak regularly with residents’ family members feel positively involved and motivated to be engaged ( Guerra et al., 2012 ).

Working in long-term care also brings volunteers into regular contact with staff members. Although staff are conceivably an important source of support for volunteers, and volunteerism supplements staff work, research on healthcare volunteer experiences (in diverse contexts) suggests that volunteers do not always find it easy to cultivate relationships with staff ( Meyer et al., 2018 ; Netting et al., 2004 ; Wong Shee et al., 2014 ). Problems between volunteers and staff are not always voiced openly, yet they may still be present ( Rimes et al., 2017 ). A potential source of strain on relationships between staff and volunteers is the limited amount of time currently allocated to orienting volunteers and staff to each other’s work. This can lead to a lack of clarity regarding the roles of volunteers and staff with respect to one another ( Tingvold & Skinner, 2019 ). Role clarification is an important initial step for supporting relationships between staff and volunteers ( Hande et al., 2021 ; Hurst et al., 2019 ). With adequate role development and support, long-term care staff may be enthusiastic about the contributions of volunteers, recognizing the benefits to residents and to their own work ( Hunter, Rissling, et al., 2020 ; Hurst et al., 2019 ).

An additional complexity faced by volunteers working in long-term care contexts is that the average length of stay in long-term care is currently as short as 18 months in some countries, meaning that most of the people who move into long-term care are near the end of life ( Armstrong, 2018 ; Sussman et al., 2017 ). A palliative approach to dementia care is increasingly advised. This approach emphasizes prioritizing psychosocial needs alongside symptom management and considers residents and family members as both care team members as well as the focus of care ( Sims-Gould et al., 2010 ). The need to support families in being more closely connected during this time is also acknowledged ( Barken & Lowndes, 2018 ; Rockwell, 2012 ). Although dementia is acknowledged as a life-limiting illness ( Brodaty et al., 2012 ), little is known about how volunteers are supported in adapting to these needs as residents with dementia approach the end of life. One intervention, called Namaste Care, has encouraged the cooperation of families and community volunteers in supporting comfort and quality of life in late-stage dementia through a hospice-like day program, with positive outcomes (e.g., Kaasalainen et al., 2020 ; Simard, 2007 ; Simard & Volicer, 2010 ). Concerning outcomes specifically associated with volunteerism, Tasseron-Dries et al. (2021) found that family caregivers involved in a Namaste Care program perceived their involvement with volunteers in the program as positive, and that the program facilitated meaningful contact with their relative. Nevertheless, such approaches seem quite uncommon within the long-term care sector overall, raising questions about how volunteers experience late-stage dementia care.

Given that long-term care is increasingly recognized as an important context for a palliative approach to care ( Hunter, McCleary, et al., 2020 ; Kaasalainen et al., 2019 ), in this study, our goal was to explore volunteers’ experiences working with people who have advanced dementia and are approaching the end of life. Given the significance of relationships between people with dementia, family members, and healthcare staff at the end of life, we approached this question with open attention to all forms of relationship described by volunteers.

This study received ethical approval from the Hamilton Integrated Research Ethics Board (#2865).

This was an explorative qualitative study underpinned by a subjectivist epistemological perspective and a critical realist ontological perspective.

Participants and setting

In 2018, a sample of volunteers was recruited from three purposively sampled healthcare facilities in the province of Ontario, Canada. One of the participating healthcare facilities was a Transitional Care Unit in an acute care setting, and the other two were medium (120 beds) and large (340 beds) not-for profit long-term care homes. Convenience sampling was used to recruit volunteers. To be eligible to participate in this study, volunteers had to be adults (> = 18) with at least 1-year of experience volunteering one-to-one with residents who have advanced dementia.

Data collection

Volunteers were asked to participate in an interview at the health facility where they volunteered. Group interviews were scheduled, and additional individual interviews were scheduled to accommodate those who could not attend. Interviewers explored volunteers’ experiences interacting with people with advanced dementia by asking volunteers about how they care for and interact with people with advanced dementia; how they involve family; and how they support staff. Prior to the interviews, participants reviewed information about the study; discussed the study with research staff; and confirmed written consent to participate. Two research staff conducted the interviews and audio-recorded them for transcription purposes. Group interviews were approximately 60 minutes long, while individual interviews lasted 30–60 minutes. A professional transcriptionist transcribed the interviews verbatim.

Data analysis

To assure sensitivity to context, the lead analyst spent 4 months in late 2019 volunteering in long-term care ( Yardley, 2000 ) while other analysts engaged in long-term care research, work, and communities of practice. In 2020, thematic analysis of the interviews began, using the tradition of Braun and Clarke (2013) (see Figure 1 ). Thematic analysis can be adapted to diverse ontologies and epistemologies. The individual ontological perspectives of members of this research team individually varied along the spectrum of critical realism to relativism, and our analysis reflects this. From time to time, we leaned into the more relativist assumption that the experiences and meanings described in our research are rooted in social discourse (recognizing the research process itself as a form of discourse). In doing so, we gave ourselves the freedom to draw from our own immersion in the long-term care context as we interpreted findings, and in this sense, co-constructed meaning with our participants. Nevertheless, as clinical researchers, we ultimately found ourselves pulled back toward the realist end of the interpretive spectrum by our common interest in identifying what would ultimately improve the experience of people living, working, and volunteering in long-term care. Our analysis was inductive ; that is, we did not rely on a particular theoretical frame to analyze the interviews, preferring to focus instead on our own interpretation ( Braun & Clarke, 2006 ; Elo & Kyngäs, 2008 ). At the outset, we attended most to semantic (manifest) content , considering the main topics the participants spoke about, and relying on the words participants themselves used ( Braun & Clarke, 2006 ; Graneheim & Lundman, 2004 ). Yet, as our analysis proceeded, and we began to discuss the implications of the findings as a team, attention to latent content (i.e., implied meaning of and associations among themes) influenced the process of naming the themes, prioritizing some over others, and organizing the themes in relation to each other ( Braun & Clarke, 2006 , 2019 ; Madill et al., 2000 ). This was the point at which we initially felt most timid, as we departed from qualitative research “recipes” toward more active interpretation, heeding prior “black box warnings” about recipe-based analysis ( Braun & Clarke, 2019 ; Sandelowski, 2010 ). As we allowed ourselves to be guided by our own immersion in the long-term care context, we began to feel more confident that we were presenting a truer picture of volunteers’ meanings.

Graphical representation of phases of thematic analysis.

Using Braun and Clarke’s (2013) approach to thematic analysis, the lead analyst first read and reread the transcripts, making notes regarding initial interpretations. Second, the data was coded and third, codes were collated into themes. These were reviewed by the third author, with reference to the original data. This led to additional collapsing of codes within the themes and renaming of themes. Next, all coded extracts were matched to potential themes, creating a thematic “map” of the analysis. Subsequently, through discussion among all authors, some themes were renamed to achieve greater coherence and consensus, and to better communicate the significance of the findings ( Elliott et al., 1999 ; Yardley, 2000 ). During this process, one theme aligned poorly with the others, whereas a subtheme within it aligned closely. To achieve greater coherence, the subtheme was emphasized and the major theme dropped (cf., Madill et al., 2000 ). In the final step, themes were described in rich detail alongside quotations from participants.

Three group interviews (Site 1, N = 6; Site 2, N = 4; Site 3, N = 3) and three individual interviews (all at Site 1, to accommodate people who could not join the group interview) were conducted with active volunteers, who agreed to share their experiences working with residents who have advanced dementia (total N = 16 across 3 sites). Most participants were female (N = 13); the remainder, male (N = 3). A majority (68%) of the participants were 65 years or older. Four (25%) were under 25 years old, and one (6%) was in the 55-to-64-year age bracket. On average, volunteers had 2.69 years of experience in long-term care (range 2–5 years; SD = 1.03 years).

Four key themes represent our analysis of volunteers’ experiences working with long-term care residents who have advanced dementia. These themes are: mutuality and empathy as the foundation of relationships with residents, family as the focus of volunteer relationships, staff support for volunteer relationships, and lastly, relationships shaped by grief (see Figure 2 ) . These themes are encompassed within an over-arching theme of relationships in dementia care volunteering .

Graphical representation of volunteers’ experiences with dementia.

Mutuality and empathy as the foundation of relationships with residents

Most volunteers spoke to how positive and rewarding volunteering can be, suggesting that their relationships with residents were considered mutually beneficial. They also described growing in empathy as they formed relationships with residents who have dementia.

Mutuality in dementia care relationships

Volunteers perceived their work with people living with dementia as rewarding, and this perception seemed to motivate them to continue their work. For instance, volunteers were often gratified when they received feedback that their work was making a difference, whether from others or from their own observations about the resident’s response to their work, as expressed in the following statement:

It’s also rewarding in the sense of seeing some of the residents as they… well they don’t progress but progress in their own way … it’s quite an experience for myself. (Participant 2, Group Interview, Site 1)

Simply being present with the residents and knowing that this might be received as a source of support or comfort was enough reward for other volunteers. Still others spoke of the opportunity to learn about dementia as one of the rewards of their work.

Volunteers often spoke about their enjoyment of social interactions as an additional motivation, or benefit. When residents were able to communicate orally, volunteers enjoyed learning from these social exchanges. As one volunteer described, “I would go in and I would start talking with them. They would talk about their histories, and it was just really meaningful” (Participant 10, Individual Interview, Site 3). When residents communicated primarily through non-verbal expressions, volunteers spoke of adapting to rely more on non-verbal cues to support their social connections. For example, one volunteer commented on the way that being recognized and greeted with a smile reinforced their social connection: “I find it very rewarding. …. Because when they come down, they smile. What more can you ask for?” (Participant 4, Group Interview, Site 1).

Empathy in dementia care relationships

It was initially challenging for volunteers to spend time with residents who exhibited limited communication skills or unanticipated inconsistencies in mood and behavior. However, as volunteers gained more experience of dementia care, they found that empathy grew in three main ways: they developed a better understanding of the symptoms of dementia, leading to more tolerance and flexibility; they resisted dementia as a defining characteristic of a resident’s identity; and they allowed their evolving understanding of the person living with dementia to guide their approach to volunteering.

Empathy for long-term care residents living with dementia increased as volunteers acquired more knowledge of dementia through their day-to-day experiences with residents. Knowledge about dementia seemed to increase through implicit learning. For example, one participant confessed that they were uncomfortable supporting residents’ memory failures at the beginning but gradually, over the years, became more comfortable answering the same question several times during a conversation, and gained skill at relying on non-verbal cues (Participant 5, Group Interview, Site 1). Increased experience with dementia helped volunteers to contextualize the mood and behavior changes residents sometimes experienced. For example, one volunteer described, “It’s [often] very easy and they are very comfortable, but they can turn very quickly” (Participant 1, Group Interview, Site 2). Being better able to contextualize these changes helped volunteers to avoid taking these reactions personally, and to take a lead role in maintaining and improving relationships. Overall, they learned to take the good days along with the bad, exhibiting greater tolerance and flexibility in their relationships with residents.

Volunteers also began to understand that although dementia is part of someone’s life, it does not completely define them. They started to perceive dementia more as a mental illness, health condition, or disability, as opposed to a fundamental change in personhood:

“Because you know it made me realize that dementia doesn’t define somebody; it’s just something the person has. Like, it’s a mental illness, but that doesn’t define who they are” (Participant 10, Individual Interview, Site 3).

As they began to resist the idea that dementia defines identity, they invested in learning more about the residents’ life histories. As they came to appreciate the residents they were working with more fully, and drew more parallels with their own lives, they also began to place themselves in the residents’ shoes: “One day it will happen to you. So never say that [it won’t]. Because they are human beings like everyone else. And 1 day, who knows” (Participant 4, Group Interview, Site 1). Imagining dementia as a possible future outcome seemed to help volunteers avoid approaching residents as an outgroup, and instead approach them as part of a group that they might belong to at some point. This helped them to treat residents the way they would wish to be treated if their own cognitive health was to change.

Finally, volunteers also expressed empathy by allowing their new understanding to shape their responses to people with dementia. For example, one volunteer observed that residents with advanced dementia benefit from a different level or kind of engagement:

I think that engagement when you have advanced dementia also looks different right? Like engagement doesn’t have to mean that you’re playing basketball with other people. It could mean that you’re just in that environment and like observing or like being involved in what’s going on. So engagement could just be like being in a comfortable relaxing space… that is relaxing them…. (Participant 3, Group Interview, Site 2)

Additionally, cognitive impairment associated with dementia can result in the expression of false beliefs or misperceptions of current events, and volunteers quickly learned that emphasizing facts could be more harmful than beneficial. Volunteers often described going along with a story to avoid upsetting the resident. As one volunteer put it, “The person would say something that, it wasn’t true... I go along with it” (Participant 3, Group Interview, Site 1).

Overall, empathy was cultivated by learning about the disease and the person, and by imagining oneself as a person who might 1 day be vulnerable to the same disease. Empathy was an important foundation for volunteers’ relationships, and guided their approaches to dementia care.

Family as the focus of volunteer relationships

Interacting with families was an important focus of volunteer work in long-term care. Volunteers’ roles included building relationships with family members, learning more about residents through families, and acting as a surrogate for familial rituals contributing to residents’ well-being, when family members were unavailable.

Volunteers perceived family members as an invaluable resource to learn more about residents. Families helped to inform volunteers about residents’ needs, furthering their understanding about residents’ lives before coming to long-term care. One volunteer described that learning by observing families can be just as important as learning by conversing with families: “Watching the family or talking to the family is a really good way to build an understanding of the best way to interact with residents” (Participant 3, Group Interview, Site 2).

Volunteers also mentioned that they were more likely to engage with family members when a resident was in the later stages of dementia. At this time, volunteers were often less involved in engaging the person with dementia directly, and their focus shifted to supporting and engaging with the family:

I think we really get to know the families. (…) Because we’re here regularly and the family members are here almost every day. And you know, oftentimes in the advanced state of dementia, like the [resident] is in … bed and not responsive and … that’s where the volunteers really connect with the family. (Participant 1, Group Interview, Site 3)

During the course of their work, volunteers learned that there was diversity in family availability and engagement. When family members were unavailable, volunteers often took it upon themselves to provide supplemental care and attention:

It is just interesting to see the dynamics that a family has and whether residents have huge families supporting them or just a small number of family members. Some residents do not have those relationships or do not have those family members coming in to visit. That can kind of help you target who needs the support more, and who is getting the support from family and who is not (Participant 3, Group Interview, Site 2).

Additionally, some volunteers spoke to the significance of holidays and special days such as birthdays, and believed that families appreciated it when they mitigated the resident’s need for companionship when family members could not be available: “It’s nice to know that somebody is always looking out for a loved one. So that kind of support is appreciated I guess” (Participant, Individual Interview #1).

Staff support for volunteer relationships

Volunteers recognized that forming strong relationships with people with dementia requires unique knowledge and skills, and that they relied heavily on their relationships with staff to improve their skills. Strong relationships with staff helped volunteers negotiate challenges that arose in their work.

Volunteers’ comments suggested that they felt supported when staff helped volunteers when care needs went beyond their scope or abilities. For example, one volunteer noted, “We’re not allowed to touch, we’re not allowed to pull people’s pants up (…) or you know do any of that physical care, because that’s nursing” (Participant 1, Group Interview, Site 3). Volunteers also perceived staff members’ readiness to provide information and respond to questions as an important form of support; for instance:

So they will be calling to get somebody to help go to the washroom. And that would be a very uncomfortable feeling if you actually have to go to the bathroom and nobody is helping you. But the staff will know [and say], ‘oh they just went to the washroom ten minutes ago [and] they haven’t had any [additional] liquids.’ (Participant 3, Group Interview, Site 2)

Volunteers expressed appreciation that even when staff did not know them well, they appeared to notice volunteer presence and were ready to assist. Volunteers felt responsible for unmet needs of long-term care residents, and when these pressures were recognized through direct assistance or reminders that staff were there to help, participants felt supported, and their sense of pressure was eased: “There’s no pressure there, they’re always asking me not to over burden myself” (Participant 3, Group Interview, Site 3). Overall, volunteers appreciated practical and informational assistance, information about role boundaries, and direct expressions of support.

Volunteers also noted that they were sometimes called upon reciprocally when staff needed support, confirming to them that there was a team relationship between staff and volunteers. They felt particularly supported and appreciated when staff recognized them as part of the team providing care to residents with dementia:

I feel that we’re really part of the team here. Because it’s a big team here on Behaviour Health and I know how important the volunteers are, because the needs are so high for the patients (…) So I feel like our contribution is really highly valued. And I think we’ve been given a good position on the team and I think we get a lot of recognition and we get a lot of thanks (Participant 1, Group Interview, site 3).

Expressions of care and concern for volunteers’ experiences contributed to a sense of teamwork. Volunteers highly valued being recognized as members of the care team.

Relationships shaped by grief

It was not unusual for long-term care volunteers to experience bereavement during the course of their work with long-term care residents living with dementia. They spoke of their preparedness for death, the experience of bereavement, and their involvement in end of life and bereavement rituals.

Among volunteers, there was an implicit expectation that they must be prepared for the deaths of the residents they worked with. Volunteers did not need to be told to prepare for this possibility; in contrast, they recognized that some of those they were working with were near the end of life, and with experience, they developed coping mechanisms to adjust to repeated loss. One coping mechanism was anticipating loss. For some, anticipating loss seemed to facilitate a certain kind of detachment, or perhaps acceptance, which was perceived to help modulate grief at a resident’s death:

When I first started here and somebody passed away, I went home very upset. But now I’ve got to the point that I know what’s going to happen so I can…not detach itself but kind of…not let it get to you.” (Participant 2, Group Interview, Site 3)

Other volunteers maintained their attachment, or emotional bond, with residents who were dying, and recognized their grief as proportional to the strength of the relationship or the frequency of contact:

And it also makes it difficult when I’ll engage with the patient one on one almost every week and then I would come back and hear that they’ve passed away or something. That also makes it I guess more uncomfortable for me. Because I’ve started to you know bond with that person and now, they’re gone (Participant 10, Individual Interview, Site 3.

Despite volunteers’ implicit understanding that many long-term care residents are nearing the end of life, a failure to recognize the impact of bereavement on volunteers reduced the quality of the volunteer experience. For instance, in the previous example, it was taken for granted that the volunteer would be notified of the death on their next workday, yet this was awkward for the volunteer. Additionally, some volunteers noted that they were invited to participate in death rituals, including funerals, bedside vigils, or other services, but felt it would be helpful to have more guidance and support for fulfilling this role:

Well one thing, they’ve got to get sensitivity training because I have been at bedside vigil because there’s no family member available. So you’re there, you don’t know whether you’re effective or not but you’re there (…) But it’s a hard place for a person to come (Participant 3, Group Interview, Site 3).

On the other hand, some volunteers described opportunities to attend memorial services with the resident’s family and community and conveyed that this was highly meaningful. For example, in describing a service for a deceased resident, one volunteer said:

And we do attend, and the family are happy that we’re there …. It was really a lovely ceremony, and everyone got to talk about that person and what they loved about her. So that was really positive and it was helpful …. And I’m glad as volunteers we’re invited to go to those services…. And the families are happy to see us there too, because I think you know they feel like their loved one was well loved by everybody” (Participant 1, Group Interview, Site 3).

The time of a resident’s death was perceived as a key time for the resident’s care team (including family, volunteers, and staff) to mourn the loss and to support each other.

Overall, several interviewees had experienced bereavement in their volunteer roles and, shared that with experience, they learned to adjust. Yet, they felt additional consideration could be given to their roles and relationships with dying residents, their families, and the staff involved in supporting their care. This was perceived as a way to support them and to improve the quality of their work.

The purpose of the current study was to understand volunteers’ experiences working with people who have advanced dementia and are approaching the end of life, with particular attention to the way they described their relationships. Using an inductive approach to thematic analysis, these experiences were represented as four key themes encompassed within an over-arching theme of relationships in dementia care volunteering . These included: mutuality and empathy as the foundation of relationships with residents, family as the focus of volunteer relationships, staff support for volunteer relationships, and lastly, relationships shaped by grief. By studying volunteers’ experiences with residents who have advanced dementia, this study sheds light on topics that have not been studied much to date, including volunteers’ provision of family-oriented care, their sense of being a part of the care team, and their responses to death. In addition, this study continued to explore topics often discussed in other studies of volunteerism, including the cultivation of relationships and empathy, and the rewards of volunteerism.

Volunteers felt more efficacious in their work, and more supported by staff when they were treated as part of the care team. Previous research has shown that volunteers consider staff support and volunteer training to be important ( Hunter, Rissling, et al., 2020 ; McDonnell et al., 2014 ). Additionally, support and training have been found to be associated with reduced emotional distress, potential burnout, and dropout rates among volunteers ( Chung, 2009 ; Hurst et al., 2019 ). However, the direct incorporation of volunteers into care teams has not been widely studied. One study using multi-level path analysis to examine volunteers’ perceptions of inclusion in healthcare teams showed that, when volunteers felt included, they felt self-efficacious and more connected to others ( Bidee et al., 2017 ). Given these positive outcomes, it may be important for long-term care facilities to guide and mentor their care teams toward thinking of volunteers as part of the care team. Recognizing volunteers as members of the care team is consistent with a relationship-centered philosophy. This tradition rests on mutual recognition, and response to the needs of each other; encompassing residents, family members, volunteers, and staff ( Wilson et al., 2009 ). Ultimately, such an approach is best fostered by making the cultivation of strong relationships a priority for the whole organization ( Wilson, 2009 ).

Within the long-term care sector, volunteer experiences with bereavement are poorly researched. Yet, this topic has been pursued in other sectors. For instance, Claxton-Oldfield (2014) found that hospice care volunteers develop a greater acceptance of death. This is consistent with findings of the current study. For example, volunteers reported making adjustments after their initial experiences of loss, and this seemed to promote their capacity to accept and cope with loss. Given that bereavement is a common experience for long-term care volunteers, volunteers would benefit from a relationship-centered approach that includes prompt notification of death, guidance in providing support for dying residents and their families, acknowledgment of loss, and inclusion in funeral ceremonies or related rituals. Further pilot studies and experimental trials of volunteer training models, including those based on a palliative approach to care, would help to expand on these few observations.

Approximately 76% of family caregivers visit long-term care homes at least once per week, while others are less frequently involved ( Tornatore & Grant, 2002 ). Family members are often involved in a range of caregiving activities, including monitoring and managing care, assisting with meals and personal care tasks, and providing emotional care ( Gaugler, 2005 ). Given the stress that family caregivers face ( Cohen et al., 2014 ; Papastavrou et al., 2007 ), they can benefit directly from the social and emotional support provided by volunteers ( Smith et al., 2018 ). In this study, volunteers clearly conceptualized their role as one that supported both the resident and the family. Volunteers learned about residents’ histories and current needs through families, suggesting a significant role for families in training volunteers. When family members were absent, volunteers actively considered how they could supplement some forms of support that are traditionally provided by families, such as being present at personally or culturally significant times. Moreover, the nature of volunteer relationships with residents’ family members changed as dementia progressed and ultimately, when residents died. Additional exploration of these relationships would be a valuable new research direction. This could impact training and support for volunteers, which currently does not always address volunteers’ relationships with families.

Finally, volunteers grew in empathy and understanding as they spent time with residents, cultivating the foundations of good relationships. Empathy is generally defined as the capacity to understand the perspective of another individual, and it is recognized as an important foundation for person-centered and relationship-centered care ( Beach et al., 2006 ; Brooker & Latham, 2016 ; Fazio et al., 2018 ). Morse’s (1992) model of therapeutic empathy suggests that empathy is comprised of four components: moral empathy (i.e., intrinsic motivation to practice empathy), emotional empathy (i.e., subjectively experiencing another person’s emotions), cognitive empathy (i.e., objectively understanding another person’s perspective), and behavioral empathy (i.e., communicating understanding of another person’s perspective through actions). Practicing therapeutic empathy can improve relationships with patients ( Morse et al., 1992 ). Our findings align well with this model in that, as volunteers spent more time with the residents, they were able to better understand the experience of dementia, adjusting their interactional style to match this new understanding. For example, as volunteers gained insight into how dementia impacts mood and behavior (i.e., cognitive empathy), they became more tolerant and flexible in their interactions with the residents (i.e., behavioral empathy). Additionally, as the amount of time volunteers spent with residents increased, so did their motivation to understand the residents (i.e., moral empathy). As a result, volunteers invested more time learning about the lives of the residents outside of their dementia diagnosis. Furthermore, volunteers also began to consider what it would feel like to be the person with dementia (i.e., emotional empathy). As volunteers learned more about the perspectives and experiences of the residents, they adjusted their style of interaction to align with the preferences of each resident, thus enhancing the quality of the relationships. Given the importance of empathy to relationships in healthcare settings, additional exploration of ways to support the development of empathy among staff and volunteers would be a valuable direction for future research.

Although our method did not allow us to examine the role of age in empathy, we did notice that several of the volunteers who participated this study were middle aged and older. One older volunteer gave voice to the thought that she might be a resident 1 day. Research does suggest that capacity for perspective-taking and emotional integration (qualities related to empathy) increase over the lifespan ( Commons & Ross, 2008 ; Kallio, 2011 ; Sinnott, 1998 ). Research also documents a decrease in existential anxiety with age ( Amjad, 2014 ) as people acquire more experience with life-limiting illnesses, including dementia. These findings fall within the domain of terror management theory, and they raise the possibility that younger volunteers and people with limited experience of dementia might, on average, find it more emotionally challenging to learn to volunteer in a long-term care context, as some studies of volunteers do suggest ( Damianakis et al., 2007 ; Foong & Zhao, 2016 ). Nevertheless, since some younger volunteers do seem to adapt and thrive in dementia care settings, it would be valuable to further explore the personal and organizational qualities that help to support this adaptation.

Findings from the current study highlight the importance of training volunteers in how to fulfill their role as part of the care team through the development of relationships with staff, residents, and families. A relational approach to training volunteers has not yet been adequately researched. However, a Volunteer Unit Model that incorporates the use of relationships in integrating volunteers into the care team has been implemented in several long-term care homes in Ontario ( Health Standards Organization, 2017 ). In this model, each volunteer is assigned to one unit within the home to promote familiarity and relationships among volunteers, residents, and staff on that unit. New volunteers begin by introducing themselves to each resident and their family members (when possible), and by asking about any specific requests the volunteer can assist with. Continued communication among staff, families, and volunteers is facilitated by resident “guest books” where volunteers record the content of their visits for families and staff to review; and a “communication corner” where information about residents is kept, and staff list special requests for volunteers. Satisfaction survey results indicate that 93% of volunteers were satisfied with this model of integration as it made volunteers feel useful, part of the team, and as though their actions had a direct impact on residents and families ( Health Standards Organization, 2017 ).

Furthermore, research examining the effectiveness of formalized mentorship programs in facilitating the integration of new staff members has shown promising results, including higher staff retention rates ( Hegeman et al., 2007 ) and increased confidence in palliative care delivery ( Frey et al., 2020 ). Although current mentorship programs support staff by cultivating strong relationships, one can easily imagine extensions to volunteers. On a broader scale, relationships in long-term care could also be cultivated through an emphasis on compassionate communities, which emphasize the role of the community in helping to provide care to older adults. For example, in one approach to compassionate communities, residents in hospice care provided university or college students with education on loss and transition by sharing their life stories. Students gained knowledge of death and dying, and created meaningful relationships with residents ( Hartley, 2012 ; Kellehear, 2013 ). One can easily imagine volunteers receiving similar training. Overall, new models of training that incorporate mentorship of volunteers and facilitate the development of relationships between volunteers, residents, and family members could be very effective in supporting volunteers as part of the care team in long-term care. Researchers could help to encourage this shift by specifically inquiring about volunteer training and support in studies of volunteer experiences.

Limitations

This study is not without limitations. First, a convenience sampling approach was used to organize group interviews, which were sometimes small or needed to be replaced by individual interviews. Although this approach likely enhanced the voices of individual participants, the study benefits less from the dialog among group members. Second, the research question was framed broadly to facilitate an environmental scan and to permit an inductive analysis, yet explicitly mentioned some topics that were ultimately distinct enough to later be defined as major themes, such as interactions with family. In contrast, some rich content areas, such as the theme of experience with death, were not guided by questions, but would be useful to explore in greater depth with participants who have experience working with dying residents.

In a relational approach to care, residents, families, and members of the community all have a valued role in the long-term care team. Findings from this study indicate that with support and appreciation from staff and family members, some community volunteers were able to experience themselves as members of the care team, and this facilitated their work. By examining volunteers’ experiences with residents who have advanced dementia, this study extends previous research findings and suggests the need for further study of topics including volunteer support and role preparation, volunteer preparedness for death, volunteers’ interactions with families, and incorporation of volunteers into care teams. Continued work to understand and support volunteers may be one way to further delineate the networks of relationships within long-term care and enhance capacity by cultivating community.

Rebeca Foffa Stina Pereira is a master’s student in Psychology at the University of Saskatchewan. Her research interests include dementia, family caregiving, pain management, and knowledge translation in long-term care.

Ivy Myge is a clinical psychology graduate student at the University of Saskatchewan. Ivy’s dissertation research project focuses on grief and bereavement among long-term care staff and family members, and the experiences of long-term care staff working during the COVID-19 pandemic.

Sharon Kaasalainen holds a research chair position in the School of Nursing at McMaster University. Sharon’s research focuses on nursing practice, pain and symptom management, advance care planning, and strengthening a palliative approach in long-term care ( www.spaltc.ca ).

Paulette Hunter is an associate professor at St. Thomas More College, University of Saskatchewan and a psychologist working in long-term care. Paulette’s research focuses on practices to promote quality of life in long-term care, including strengthening a palliative approach in long-term care ( www.spaltc.ca ).

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project received financial support from Canadian Institutes of Health Research in partnership with the Alzheimer’s Society of Canada (#379197).

Paulette V Hunter https://orcid.org/0000-0003-1927-0433

Sharon Kaasalainen https://orcid.org/0000-0003-2175-6037

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SINGAPORE: A new volunteer programme called Silver Guardian has been launched as part of a national initiative to help seniors age actively.

The latest programme is the fourth prong of Age Well SG , with the other three being improvements to homes and living environments, improvement to transport facilities and expanding programmes for seniors to remain connected.

Age Well SG - which complements Healthier SG - was announced in August 2023 and launched in November of the same year.

The government will also set aside S$3.5 billion over the next decade for initiatives under Age Well SG , said Deputy Prime Minister and Finance Minister Lawrence Wong in his Budget speech in February.

The latest initiative was announced by Health Minister Ong Ye Kung on Friday (Apr 5) at the Presbyterian Community Services Esther Active Ageing Centre.

Seniors may experience a sense of loss post-retirement, Mr Ong said, adding that this void could be filled by volunteerism, even if it is not a full substitute for work.

The Agency for Integrated Care (AIC) has recruited thousands of volunteers, known as Silver Generation Ambassadors. These volunteers currently engage seniors in their homes and community places by checking in on them and connecting them to relevant government schemes.

SILVER GUARDIAN PROGRAMME

The new volunteer programme launched on Friday - Silver Guardian - will complement the work done by Silver Generation Ambassadors, said Mr Ong.

The new Silver Guardian volunteers will help with the implementation of activities at Active Ageing Centres (AAC), such as befriending seniors, as well as organising and facilitating activities at the AACs.

S$800 million earmarked for improvements to active ageing centres as part of new Age Well SG initiative

HDB flats, estates to be more senior-friendly to prepare for Singapore's 'super-aged society': PM Lee

Budget 2024: S$3.5 billion to be set aside over next decade to help elderly age well

The programme was piloted last April by AIC when it recruited, trained and matched senior volunteers to 12 AACs, said Mr Ong. 

These volunteers co-facilitated active ageing programmes like Chair Zumba, and some of them also befriended at-risk seniors and provided support and encouragement to them, Mr Ong added.

A first batch of 400 Silver Guardian volunteers has been recruited, with AIC aiming to increase this to 2,400 by 2028.

"Both the beneficiaries of the volunteer work and the volunteers will benefit from the programme. The recipient benefits, and the giver potentially can benefit even more," said Mr Ong.

"If implemented well, the programme will strongly support seniors in ageing well, and will truly embody the spirit of community health." 

Daily Cuts: How can we make it easier for people to volunteer in Singapore?

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Publications

Key publications (from a list of 150 papers).

Koh, W, Soo SA, Saffari SE, Chiew HJ, Ng ASL, Ng KP, Kandiah N. Normative data for baseline and longitudinal neuropsychological assessments in Singapore. Accepted for publication in Annals Academy of Medicine, Singapore in Oct 2023.

Vipin A, Kumar D, Soo SA, Zailan FZ, Leow YJ, Koh CL, Ng ASL, Ng KP, Kandiah N. APOE4 carrier status determines association between white matter disease and grey matter atrophy in early-stage dementia. Alzheimer’s Research & Therapy, 15 (1), 103. DOI:10.1186/s13195-023-01251- 4

Soo SA, Kumar D, Leow YJ, Koh CL, Saffari SE and Kandiah N. Usefulness of the Visual Cognitive Assessment Test (VCAT) in detecting mild cognitive impairment in the community. April 2023, Journal of Alzheimer’s Disease, 93 (2), 755-763. DOI:10.3233/JAD-221301

Tan J, Wee ACW, Foo JN, Lian MM, Lim WK, Dominguez JC, Fong ZH, Narasimhalu K, Chiew HJ, Ng KP, Ting SKS, Kandiah N, Ng A. C9orf72 expansions are the most common cause of genetic frontotemporal dementia in a Southeast Asian cohort. February 2023. Annals of Clinical and Translational Neurology, 17, PMID: 36799407, DOI: 10.1002/acn3.51744

Tan J, Siow I, Saffari SE, Ting SKS, Zeng L, Kandiah N, Tan LCS, Tan EK, Ng A. Plasma Soluble ST2 Levels Are Higher in Neurodegenerative Disorders and Associated with Poorer Cognition. February 2023. Journal Of Alzheimer’s Disease, 92 (2), 1-8, PMID: 36776067, DOI: 10.3233/JAD-221072

Kumar S, Luca AD, Leemans A, Saffari SE, Hartono S, Zailan FZ, Ng KP, Kandiah N. Topology of diffusion changes in corpus callosum in Alzheimer’s disease: An exploratory case-control study. Frontiers of Neurology, November 2022, 13, PMID: 36530616, DOI: 10.3389/fneur.2022.1005406

Yeap YJ, Kandiah N, Nizetic D, Lim KH. BACE2: A Promising Neuroprotective Candidate for Alzheimer’s Disease. November 2022, Journal Of Alzheimer’s Disease, PMID: 36463454, DOI: 10.3233/JAD-220867

Kandiah N, Choi SH, Hu CJ, Ishii K, Kasuga K, Mok VCT. Current and Future Trends in Biomarkers for the early detection of Alzheimer’s Disease in Asia: Expert Opinion, Journal of Alzheimer’s Disease Reports, November 2022, 6(1), 699-710. PMID: 36606209, DOI: 10.3233/ADR-220059

Vipin A, Koh CL, Wong BYX, Zailan FZ, Tan JY, Soo SA, Satish V, Kumar D, Wang BZ, Ng A, Chiew HJ, Ng KP, Kandiah N. Amyloid tau neurodegeneration profiles and longitudinal cognition in sporadic young onset dementia, Journal of Alzheimer’s Disease, September 2022, 90 (2), 543-551. PMID: 36155511, DOI:10.3233/JAD-220448

Oh SL, Zhou MK, Chin, EWM, Amarnath, G, Cheah, CH, … Kandiah, N… Chiam, KH. Alzheimer’s Disease Blood Biomarkers Associated With Neuroinflammation as Therapeutic Targets for Early Personalized Intervention. 11 July 2022, Frontiers in Digital Health, 4 (875895). PMID: 35899035, DOI:10.3389/fdgth.2022.875895

Sandhu GK, Zailan FZ, Vipin A, Soo SA, Kumar D, Ng KP, Kandiah N. Correlation between plasma Oligomeric Amyloid Beta and performance on the language neutral Visual Cognitive Assessment Test in a Southeast Asian population. Journal of Alzheimer’s Disease. 2022 Jul 11.PMID: 35848029, DOI:10.3233/JAD-220484

Chia SY, Vipin A, Ng KP, Tu H, Bommakanti A, Wang BZ, Tan YJ, Zailan FZ, Ng AS, Ling SC, Okamura K, Tan EK, Kandiah N, Zeng L. Upregulated Blood miR-150-5p in Alzheimer’s Disease Dementia Is Associated with Cognition, Cerebrospinal Fluid Amyloid-β, and Cerebral Atrophy. J Alzheimers Dis. 2022 Jul 5. PMID: 35811521 doi:10.3233/JAD-220116

Kumar, D, Yatawara, C, Wang, BZ, Wong, B, Tan, Y.J, Zailan, FZ, Ng, KP, Kandiah, N. APOE E4 and confluent WMH have a synergistic effect on episodic memory impairment in prodromal dementia. 2022. Journal of Alzheimer’s Disease, 87 (3), 1-12. PMID: 35431245, DOI:10.3233/JAD-215556

X Xu, KA Chew, ZX Wong, AKS Phua… N Kandiah, CL-H Chen. The Singapore Geriatric Intervention Study to Reduce Cognitive Decline and Physical Frailty (SINGER): Study Design and Protocol. (2022). The Journal of prevention of Alzheimer’s Disease, 9(1), 40-48. PMID: 35098972, DOI: 10.14283/jpad.2022.5

Vipin A, Satish V, Saffari SE, Koh W, Lim L, Silva E, Nyu MM, Choong TM, Chua E, Lim L, Ng ASL, Chiew HJ, Ng KP, Kandiah N. Dementia in Southeast Asia: influence of onset-type, education, and cerebrovascular disease. Alzheimers Res Ther. 2021 Nov 30;13(1):195. doi: 10.1186/s13195-021-00936-y. PMID: 34847922; PMCID: PMC8630908.

Wong FCC, Saffari SE, Yatawara C, Ng KP, Kandiah N; Alzheimer’s Disease Neuroimaging Initiative. Influence of White Matter Hyperintensities on Baseline and Longitudinal Amyloid-β in Cognitively Normal Individuals. J Alzheimers Dis. 2021;84(1):91-101. doi: 10.3233/JAD-210333. PMID: 34511497.

Ng KP, Cheng GH, Yatawara C, Rosa-Neto P, Gauthier S, Kandiah N; Alzheimer’s Disease Neuroimaging Initiative. Baseline Neurodegeneration Influences the Longitudinal Effects of Tau on Cognition. J Alzheimers Dis. 2021;82(1):159-167. doi: 10.3233/JAD-201425. PMID: 33998536.

Soo SA, Ng KP, Wong F, Saffari SE, Yatawara C, Ismail Z, Kandiah N. The Association Between Diabetes Mellitus and Mild Behavioral Impairment Among Mild Cognitive Impairment: Findings from Singapore. J Alzheimers Dis. 2021;82(1):411-420. doi: 10.3233/JAD-210037. PMID: 34024829.

Vipin A, Wong BYX, Kumar D, Low A, Ng KP, Kandiah N. Association between white matter hyperintensity load and grey matter atrophy in mild cognitive impairment is not unidirectional. Aging (Albany NY). 2021 Apr 16;13(8):10973-10988. doi: 10.18632/aging.202977. Epub 2021 Apr 16. PMID: 33861727; PMCID: PMC8109133.

Ng KP, Chiew HJ, Hameed S, Ting SKS, Ng A, Soo SA, Wong BYX, Lim L, Yong ACW, Mok VCT, Rosa-Neto P, Dominguez J, Kim S, Hsiung GYR, Ikeda M, Miller BL, Gauthier S, Kandiah N. Frontotemporal dementia and COVID-19: Hypothesis generation and roadmap for future research. Alzheimers Dement (N Y). 2021 Jan 15;6(1):e12085. doi: 10.1002/trc2.12085. PMID: 33490361; PMCID: PMC7810128.

Kandiah N, Chan YF, Chen C, Dasig D, Dominguez J, Han SH, Jia J, Kim S, Limpawattana P, Ng LL, Nguyen DT, Ong PA, Raya-Ampil E, Saedon N, Senanarong V, Setiati S, Singh H, Suthisisang C, Trang TM, Turana Y, Venketasubramanian N, Yong FM, Youn YC, Ihl R. Strategies for the use of Ginkgo biloba extract, EGb 761® , in the treatment and management of mild cognitive impairment in Asia: Expert consensus. CNS Neurosci Ther. 2021 Feb;27(2):149-162. doi: 10.1111/cns.13536. Epub 2020 Dec 22. PMID: 33352000; PMCID: PMC7816207.

Kumar D, Vipin A, Wong B, Ng KP, Kandiah N. Differential Effects of Confluent and Nonconfluent White Matter Hyperintensities on Functional Connectivity in Mild Cognitive Impairment. Brain Connect. 2020 Dec;10(10):547-554. doi: 10.1089/brain.2020.0784. Epub 2020 Nov 16. PMID: 33050714.

Koh, W., Lim, L., Low, A., Wong, B., Lim, L., Silva, E., …Kandiah, N. Development and validation of a brief visual based cognitive screening tool for dementia: the Visual Cognitive Assessment Test short-form (VCAT-S). Journal of Neurology, Neurosurgery, and Psychiatry. 91 (10), 1122-1123. DOI: 10.1136/jnnp-2020-323106. PMID:32732390.

Wong FCC, Yatawara C, Low A, Foo H, Wong BYX, Lim L, Wang B, Kumar D, Ng KP, Kandiah N. Cerebral Small Vessel Disease Influences Hippocampal Subfield Atrophy in Mild Cognitive Impairment. Transl Stroke Res. 2021 Apr;12(2):284-292. doi: 10.1007/s12975-020-00847-4. Epub 2020 Sep 7. PMID: 32894401.

Wang BZ, Zailan FZ, Wong BYX, Ng KP, Kandiah N. Identification of novel candidate autoantibodies in Alzheimer’s disease. Eur J Neurol. 2020 Nov;27(11):2292-2296. doi: 10.1111/ene.14290. Epub 2020 May 25. PMID: 32356904.

Low, A., Lim, L., Lim, L., Wong, B., Silva, E., …Kandiah, N. Construct validity of the Visual Cognitive Assessment Test (VCAT) – A cross-cultural language-neutral cognitive screening tool. International psychogeriatrics. 32 (1), 141-149. DOI: 10.1017/S1041610219000504. PMID: 31111797.

Low, A., Ng K.P., Chander, R.J., Wong, B., Kandiah, N. Association of Asymmetrical White Matter Hyperintensities and Apolipoprotein E4 on Cognitive Impairment. Journal of Alzheimer’s Disease, 70 (3), 1-12. DOI: 10.3233/JAD-190159. PMID: 31306121.

Yatawara C, Ng KP, Chander R, Kandiah N. Associations between lesions and domain-specific cognitive decline in poststroke dementia. Neurology. 2018 Jul 3;91(1):e45-e54. doi: 10.1212/WNL.0000000000005734. Epub 2018 May 25. PMID: 29802171.

Kandiah N, Zhang A, Bautista DC, Silva E, Ting SK, Ng A, Assam P. Early detection of dementia in multilingual populations: Visual Cognitive Assessment Test (VCAT). J Neurol Neurosurg Psychiatry. 2016 Feb;87(2):156-60. DOI: 10.1136/jnnp-2014-309647. Epub 2015 Feb 17. PMID: 25691617.

Yatawara, C., Lim, L., Chander, R., Zhou, J., Kandiah, N. Depressive symptoms influence global cognitive impairment indirectly by reducing memory and executive function in patients with mild cognitive impairment. Journal of Neurology Neuosurgery and Psychiatry, 87 (12), 1375-1383. DOI: 10.1136/jnnp-2016-314191. PMID: 28103200.

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Vision changes could predict dementia 12 years before diagnosis, study says

The eyes are the window to the soul, and, according to new research, possibly the answer to predicting a dementia diagnosis way ahead of time.

Researchers from Loughborough University and the University of Cambridge have found that a loss of visual sensitivity could predict dementia 12 years before it is diagnosed.

The study, published in the journal Nature , suggests that visual problems may be an early indicator of cognitive decline. This is because amyloid plaques - proteins that form in the spaces between nerve cells in the brain - that are associated with Alzheimer’s disease may affect brain regions linked to vision, the scientists said.

As the disease progresses, parts of the brain associated with memory become damaged. But the study suggests that testing a person’s vision may provide the opportunity of finding these plaques before their memory begins to be affected by the disease.

Researchers followed the visual sensitivity of 8,623 healthy people in Norfolk over the course of more than a decade. By the end of the study, 537 people had developed dementia.

Writing in The Conversation , the study authors explained that they asked participants to take a visual sensitivity test at the start of the study, which involved pressing a button as soon as they saw a triangle forming in a field of moving dots.

By the end of the study, they found that "people who would develop dementia were much slower to see this triangle on the screen than people who would remain without dementia".

"Despite these exciting findings, treatment for memory problems using deliberate eye movements in older people has not been done that much yet," the study authors said. "Also, using deficits in eye movements as a diagnostic is not a regular feature, despite the possibilities in eye movement technology."

The publication of this study comes just weeks after recent research found that millions of people with mild cognitive impairment are going undiagnosed until it’s too late . Mild cognitive impairment can be an early sign of Alzheimer’s disease, but is widely underdiagnosed in people aged 65 and over.

Scientists, from the University of Southern California, warned that the failure to detect this early symptom "might deprive patients of an opportunity to get treated and to slow down disease progression".

Why is it crucial to get a diagnosis for Alzheimer’s as early as possible?

Experts have emphasised the importance of early diagnosis for Alzheimer’s and other dementia-related diseases to give people the best possible chance to live longer and better quality lives.

Dr Emer MacSweeney, consultant neuroradiologist and medical director at cognitive health provider Re:Cognition Health , tells Yahoo UK that early diagnosis is "crucial for timely intervention and access to effective treatment options".

"It allows individuals to plan for their future care and maximise the benefits of available therapies and also enables better management of symptoms and improves overall quality of life.

"An early diagnosis also enables individuals to participate in clinical trials, testing new-generation medications designed to slow down or halt the disease progression – these medications can only be accessed through clinical trials in the UK and require an early diagnosis," she adds.

Dr Johannes Uys, doctor at Broadgate GP , also believes early detection for dementia is "paramount" not just for the patient, but for those around them.

"Detecting any disease early (not just those associated with mental impairment) will give you the best chance to mitigate bad symptoms or even improve the individual’s condition.

"One of the most significant aspects of this is the fact that any treatment you provide will have a longer time to administer its effects. Additionally, it will also give doctors more opportunities to detect alternative medicines, treatments, or non-pharmacological interventions.

"Early detection also provides the family with more space to plan for the future or make important decisions while the person with dementia is still able to participate in the process."

Watch: A Minute Of Kindness: The Dementia-Friendly Barber

Early signs of Alzheimer’s to look out for:

Short-term memory lapses: forgetting recent events, repeating questions

Behavioural alterations: unexpected anger, mood swings, passivity, anxiety

Confusion: temporal disorientation, cognitive processing issues

Language difficulties: problems with word retrieval, speech impediments

Spatial disorientation: losing way in familiar settings

Impaired daily tasks: struggles with everyday normal activities

Cognitive challenges: money management, basic calculations

Misplacing items: e.g. putting keys in the freezer and not being able to retrace your steps to find them

Decision-making difficulties: poor judgments, dressing inappropriately

Visual and spatial perception issues: trouble with reading, spatial awareness

Dr MacSweeney adds: "Experiencing two or more of these symptoms warrants prompt consultation with a medical professional. While some issues may stem from treatable conditions, early Alzheimer’s detection empowers proactive measures.

"The evolving landscape of Alzheimer’s research heralds promising developments in medications aimed at slowing or halting its progression. Consequently, accessing interventions early on holds the greatest potential for mitigating symptoms effectively."

Dr Uys adds that, while people usually start to experience symptoms of dementia around the age of 65, this doesn't rule out the possibility of younger individuals having it .

"In fact, young-onset dementia can happen to those even in their 30s," he says. "The symptoms will usually be similar in that they combine memory loss, cognitive decline, and changes in personality or behaviour.

"However, there are different forms of dementia, especially among younger demographics, so it’s important to get verification from a medical professional before making assumptions."

Read more about mental health and dementia:

The early signs of Dementia: 'I thought my nan was grieving, but it was Alzheimer's' (Yahoo Life UK, 8-min read)

The love of my life was diagnosed with dementia at 48 (Yahoo Life UK, 9-min read)

Mental health benefits of brainteasers as GCHQ releases its 2023 codebreaker (Yahoo Life UK, 4-min read)

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• Dr. Daniel Gillen Named AAAS Fellow

Dr. Daniel Gillen

Daniel Gillen, PhD, Chancellor’s Professor and Chair of Statistics and the leader for the ADRC Data Management and Statistics Core was recently named a fellow of the American Association for the Advancement of Science (AAAS).  Dr. Gillen will be honored in September in Washington D.C. for this rare achievement.

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• Dr. Daniel Gillen Named AAAS Fellow April 18, 2024
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Stop giving dementia patients antipsychotic drugs to avoid risk of strokes and broken bones, says research

Medics should slow their use of antipsychotic medication for dementia patients , experts have said, after a new study found that using the drugs can put patients at risk of a horde of different health conditions.

Experts said that the side effects linked to antipsychotics for dementia patients “may be more severe than previously understood”.

Antipsychotic drugs may be prescribed for people with dementia who develop aggression and psychosis, but these drugs are usually only prescribed after other drugs have been tried such as antidepressants, antidementia or anticonvulsant drugs.

Experts are now calling for more to be done to reduce prescriptions after research found that people with dementia who take the drugs could be at higher risk of a number of other illness including pneumonia, bone fractures and stroke.

The new study, published in The BMJ, examined data from 174,000 adults GP surgeries in England on older adults who were diagnosed between dementia between 1998 and 2018.

Some 35,339 were prescribed antipsychotics during the study – 63 per cent of whom were women – and their medical records were compared to dementia patients who were not prescribed these drugs.

Academics from the Universities of Manchester, Nottingham, Edinburgh and Dundee found that dementia patients who were current users of antipsychotic drugs had a two-fold increased risk of developing pneumonia compared to those who were not taking the drugs.

Researchers also found that dementia patients who took antipsychotics had a 61 per cent increased risk of stroke and a 43 per cent elevated risk of breaking a bone.

They also found a 28 per cent increased risk of heart attack and a 27 per cent increased risk of heart failure.

Patients with dementia who were prescribed antipsychotics appeared to have a 72 per cent increased risk of kidney injury and 62 per cent increased risk of developing a type of blood clot called a venous thromboembolism.

Experts said that the increased risks appeared to be highest in the first week after treatment.

The authors said that their figures suggest over the 180 days after starting the drugs, use of antipsychotics might be associated with one additional case of pneumonia for every nine patients treated and one additional heart attack for every 167 patients treated.

The study is observational, so no firm conclusions can be made about cause and effect, but the authors wrote: “The range of adverse outcomes was wider than previously highlighted in regulatory alerts, with the highest risks soon after initiation of treatment.”

Senior author of the study, Professor Darren Ashcroft, from the University of Manchester, said: “In recent years, it has become clear that more people with dementia are being prescribed antipsychotic drugs, despite existing regulatory safety warnings.

“It is important that any potential benefits of antipsychotic treatment are weighed carefully against the risk of serious harm, and treatment plans need to be regularly reviewed in all health and care settings.”

Commenting on the study, Dr Sheona Scales, director of research at the charity Alzheimer’s Research UK, said: “The distressing symptoms of dementia, such as confusion and agitation, pose significant challenges for people living with dementia, their families, and caregivers.

“Treatments that can help manage these symptoms are essential for a better quality of life, but options are currently limited, and in certain circumstances antipsychotics can be used to treat severe symptoms.

“However, these new findings suggest that these risks may be more severe than previously understood, which is particularly concerning given the rise in their use during the pandemic.”

Charles Marshall, professor of clinical neurology at Queen Mary University of London, added: “This evidence should prompt renewed efforts to reduce the prescribing of antipsychotics to people living with dementia.”

Dr Tom Russ, honorary consultant psychiatrist at the University of Edinburgh, added: “This study does not suggest to me that these medications should never be used, but they should be used sparingly in situations where other avenues have been explored.”

Masud Husain, professor of neurology at the University of Oxford, said: “These findings add to existing evidence about the need to be cautious in prescribing antipsychotics to people with dementia.”

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April 17, 2024

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Study shows gaps in new nursing graduates' work readiness

by SingHealth

About 60 percent of nurses with less than two years' work experience are uncomfortable with performing procedures of higher complexity—such as responding to a critical clinical emergency, performing tracheostomy (a surgically created hole in the windpipe) care and suctioning, and chest tube care independently. This requires a lengthened duration of supervision for such procedures in order to ensure the quality of care is never compromised.

The findings were from a study conducted by Singapore General Hospital (SGH), Sengkang General Hospital (SKH), and Singapore Institute of Technology (SIT) to determine how work-ready new nursing graduates are when they join the workforce.

"We wanted to examine how to help best young graduate nurses adjust to their new roles as they transition to the workforce, and this study highlighted the key challenging areas they encountered when they started work," said Dr. Lim Siew Hoon, Nurse Clinician, Division of Nursing, SGH, and corresponding author of the study.

Between November and December 2022, the SGH-led team surveyed more than 450 nurses who joined SingHealth institutions within two years after graduation with either a local diploma or a bachelor's degree.

The findings further showed that more than 40 percent of respondents felt overwhelmed by ethical issues associated with patient care responsibilities, such as when a patient's family's desire conflicts with the required care for the patient. Thirty-seven percent of the nurses surveyed had difficulty managing a dying person.

Twenty-six percent also felt challenged in prioritizing the care needs of multiple patients at any one time, when, for example, a junior nurse has to handle a patient requiring urgent medication and another's call for urgent toilet assistance. Over 20 percent of them also found it challenging to adapt to new technologies and identify data needed specifically for research or quality improvement projects.

Despite these findings, all health care Institutions have a robust competency assessment and training system to ensure new graduates quickly and safely assimilate into their roles. As the findings show, more can be done to enable nurses to transition more smoothly into the workforce after their studies. One way is to look into the training methodology of nurses to help them become more confident practitioners.

The recently launched five-year Bachelor of Science in Nursing—Master of Science in Nursing (BSN-MSN) program is one new opportunity. Developed by the Singapore Institute of Technology (SIT) in collaboration with SingHealth, the BSN-MSN features a through-train approach to equip students with specialized skills that will nurture a new generation of practice-ready nurses who are trained across various clinical settings.

For instance, prospective BSN-MSN students will complete 36 weeks of clinical residency at one of SingHealth's 11 institutions instead of the 32 weeks required by the Singapore Nursing Board. The extra four weeks of residency will allow nursing students to devote more time to clinical practice so that they gain more confidence to perform basic nursing procedures independently after they graduate.

"The BSN-MSN program also focuses on equipping students with practical research and innovation skills. MSN students will be required to work on real-life clinical problems to improve patient care."

"This will provide the students with the opportunity to be intimately involved in the whole research and/or innovation process, thereby honing their methodology capabilities to work on more complex and bigger clinical problems after they graduate," said Adjunct Professor Tracy Carol Ayre, Group Chief Nurse, SingHealth, and the study's senior author.

"I am confident that graduates from this new BSN-MSN program will be better equipped, both in knowledge and practical know-how, to take on the nursing challenges that an aging population will bring," she added.

The study's findings were published in Nurse Education in Practice .

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