This week’s blog post is an HDRC ‘voice of the members’ blog written by Michael Roberts, Engaged Lives Project Officer at the ExtraCare Charitable Trust. The organisation is a provider of Extra Care Housing Schemes and Retirement Villages and is a member of the HDRC steering group.
Dementia and Loneliness – What’s the link?
Of 850 000 people living with dementia in the UK, just over one-third of those experience moderate or severe loneliness [1]. This is the estimate of a 2020 study, which analysed data from over 1500 older people to learn more about the connection between dementia and loneliness [2].
What was surprising from this research, conducted by Christina Victor et al., was how similar this rate is to that of the UK’s broader older population (where roughly 30% of people are reported to be either moderately or severely lonely). More surprising though was the finding that dementia-specific factors, type of dementia or an individual’s cognitive function, did not appear to be linked to loneliness in any significant way.
This is one of very few large-scale studies to examine the link between dementia and loneliness, so it’s important to view it with caution. Yet, it is a helpful reminder not to be led by our assumptions when it comes to supporting people living with dementia – it can be tempting to think that dementia naturally brings escalating challenges to communication and connection that can make loneliness a likely destination – and instead to be open and alert to the factors of real significance, where we might target effective support.
In fact, the study from Victor and her team suggests that loneliness amongst those living with dementia was more strongly associated with a range of factors predictive of loneliness in the broader population, including living alone, social isolation, depression and lower quality of life. Living with dementia may make some items on this list more likely, but if we can help people with these issues, then their dementia itself seems to present a much less significant barrier to connection that we might have assumed.
One of the authors’ conclusions is that we therefore ought to replicate some of the same forms of intervention that we already know help people with loneliness, thereby bridging the gap and supporting those with dementia in a similar way to those without. They suggest that interventions “place more emphasis on helping people with dementia maintain their social relationships and links with their local community.”
How can we help?
People in the early stages of dementia remain extremely capable of taking on board new information and making the kind of broad lifestyle changes that can keep social links strong. Working with loneliness is about dealing with the reality of the here and now – what is this individual capable of doing right now to feel more connected? – while also taking steps to anticipate difficulties further down the line. And each of these needs to recognise that loneliness is usually a symptom of more foundational issues in people’s lives, so targeting these issues can give our interventions the best chance of providing long-lasting benefits.
With these principles in mind, we at the ExtraCare Charitable Trust have designed our “Engaged Lives” project (funded by the National Lottery) as more than just a reaction to the symptoms of loneliness, but a means to address fundamental issues that underpin feelings of social lack amongst our residents. We have not simply put on more activity groups or coffee mornings. Instead we have launched peer-support workshops across our retirement communities, to address deeper issues. Here, individuals get together over 6-weeks to explore a variety of personal and often psychological topics, that can help them to understand and move beyond their personal obstacles to connection.
We explore things like: our vision of older age; thinking and behavioural patterns; ways of staying mobile; and strategies for dealing with difficult emotions. All of these are about finding ways to build people’s confidence and capacity to connect with others. In each week, people have an opportunity to recognize and share their own challenges, while working through these with the help of workshop materials and the rest of the group.
For instance, in week two, our groups focus on the importance of paying attention to their relationships as they get older– checking in regularly with how many they have and how satisfying these are – and doing things to “nourish” and supplement relationships as time goes on. If we can do this, we are less likely to wake up one day and ask ourselves “where has everyone gone?”
These are some steps that people in the early stages of a dementia can take to significantly lessen their likelihood of experiencing loneliness in the present and in the future. If people are supported to nourish their relationships right now, they will be less likely to be socially isolated when their dementia is more advanced and such steps might be more difficult.
Similarly, if people are supported to take steps in the present to deal with symptoms of mild depression, by becoming more aware of behavioral and cognitive habits, practicing mindfulness or gratitude, or finding was to contribute to their community, they’ll be less likely to find themselves with advanced mental health issues later in life that we know are a really significant predictor of disconnection and loneliness.
We have had people attend our workshops with cognitive impairment and early-stage dementia who we’ve seen to benefit from the group, and whom we are confident will benefit in the future from the small but significant changes they’ve made over their 6-weeks together. Certainly, more specialised dementia support for loneliness is crucial to supplement this, but it helpful to be aware of the similarities between those with and without dementia (including what helps), rather than to focus exclusively on what separates us.
The driving ambition in our project is to empower people to take steps now so they can lead more connected lives in the future. This way, we anticipate loneliness in those living with dementia, rather than simply responding to it. But the benefits of this are even broader, for we know that loneliness can also be significant factor in one’s likelihood of developing dementia in the first instance.
A recent meta-analysis from researchers in Spain found that loneliness was associated with a 26% increased risk of dementia [3], while one study found a 105% increased risk of precursors like mild cognitive impairment [4]. These suggest that working to reduce loneliness in the above ways can also lessen the likelihood of people developing dementia and raises the possibility that working to improve social connections might also slow dementia progression.
The authors hypothesize that lonely individuals may engage in poorer health behaviours, including lack of exercise, poor dietary choice, or substance abuse, which can accelerate dementia’s progression. And loneliness is also closely associated with depression, itself a risk factor for Alzheimer’s disease. Given this, interventions that work on deeper issues – crucially including people’s expectations about older age (that older people are lonely, inactive or useless etc.) from which we know behaviours can naturally follow – might serve a real benefit when it comes to the likelihood of developing a form of dementia.
So, we know that helping people address fundamental issues underpinning social connection serves a dual purpose: empowering those living with a dementia to take steps to lessen it’s impact on their feelings of social connection going forwards, and also lessens the likelihood of someone developing a dementia in the first instance. And, with these two aims in mind, through the 2020 coronavirus lockdowns, we spent time packaging our workshops materials into a book, to bring these benefits of the Engaged Lives projects to a wider audience.
Steps to Connection: A Guide to Finding Community in Older-Age
Steps to Connection is a 72-page, “interactive guide book” for those seeking to strengthen their sense of connection and community as they get older. The book extends the materials we explore in our peer support groups with additional reflective exercises and topics, to yield 10 steps that people can take to boost their sense of connection and belonging.
One step focuses on “Finding Community as a Carer”, as we know that a staggering two-thirds of people caring for those with dementia experience loneliness themselves (twice the rate of those living with dementia) and we want Steps to Connection to support to them too. This topic is something the author will talk about further at the HDRC online conference on 21st Sept 2021 (see end of blog for more details).
All in all, we hope that the new publication can go some way to supporting those who experience loneliness or dementia to find connection in later life, something we all should expect whatever our age or condition.
Those interested in the work ExtraCare are doing in the Engaged Lives Project, or in offering Steps to Connection to their residents or service users, can find more details here, or contact Project Officer, Dr Michael Roberts on michael.roberts@extracare.org.uk
References
[1] The figure 850000 is referenced on the NHS website here https://www.nhs.uk/conditions/dementia/about/
[3] See here https://www.sciencedirect.com/science/article/pii/S1568163718302472?via%3Dihub
[4] See https://www.alzdiscovery.org/cognitive-vitality/blog/loneliness-and-the-risk-of-dementia#ref-2. Also https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7437541/ and for some hypothesises of the mechanisms of this – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5764000/
Thanks to Michael and the ExtraCare Charitable Trust for the blog.
You can find out more about the HDRC online conference ‘What does “build back better” mean for people living with dementia in extra care and retirement housing?’ here, and can book using this link.
Connect with the HDRC on twitter @HousingDementia
Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow
Association for Dementia Studies Blog 
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