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

An Article from SMU Newsroom

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

Media Release - More Believe Persons With Dementia Can Live Fulfilling Lives Though Stigma Associated With The Condition Remains High.pdf

Originally published at https://news.smu.edu.sg/news/2023/05/12/more-believe-persons-dementia-can-live-fulfilling-lives-though-stigma-associated

Back to Research@SMU May 2023 Issue