Author Archives: jh790

Living in the present with dementia – museums and the moment

by Debbie Kinsey

Dementia can be very socially isolating both for the person with dementia and those who care for them. Isolation and loneliness are incredibly common in older people and are both much harder to cope with when those people are also living with dementia. Many people find it more difficult to access community venues and events, and to either continue with previous interests or find new ones, especially when the general assumptions about what people with dementia are able to do can be so negative.

There‘s increasing work on finding ways to support carers of people with dementia in ensuring they live as well as they can with the condition. This includes considering what the cultural arts could offer, particularly as they gain evidence more generally in holistic healthcare. Exeter’s Royal Albert Memorial Museum (RAMM) has been dementia-friendly since 2013.

RAMM offers monthly dementia-friendly activities including object-handling, art-making, and exhibition tours, as well as quarterly special events including music in the museum. Volunteering on RAMM’s programme has given me valuable insights into how these programmes (and museums in general) function, and hugely influenced my thinking and the work I’m doing now.

Museums are places that are accessible (and often free!) beyond just the time a group or activity is actually happening. This means dementia-friendly activities in places like museums may be particularly valuable in opening up spaces in the community for people with dementia, as well as simply being interesting and stimulating.

Over the past year, I’ve been working closely with RAMM in Exeter. As part of my PhD research examining museum programmes for people with dementia, I’m creating a theory examining the impact of including carers in dementia programmes on the person with dementia, the carer, and the relationship between them. Although this will be within a museum-specific context, the theory should be applicable more generally across many aspects of dementia care and wider.

Despite the fact that most interventions and programmes (including those in a museum context) do involve carers, there’s very little research examining the impact of this. If we can understand this impact, we can enable museums programmes to run more effectively through understanding who they work for (and, just as importantly, who they don’t work for), and what works for whom. It will also indicate how to best support people on the programme, as well as providing general evidence for their effectiveness.

The kind of museum programme I’m interested in is focused on the present moment, rather than on reminiscence. It’s about enjoying the activity, being intellectually stimulated, expressing yourself, and socialising in a group. It’s also about the shared experience of the person with dementia and their caregiver – enjoying the activity on an equal basis.

For example, recently, a daughter and mother came to an object-handling session at RAMM. The mother has dementia and is legally blind, and her daughter was struggling to find activities which were both accessible and related to her mother’s interests. After tea and coffee, they held objects together and talked about the different textures and shapes they could feel. The daughter described some of what the objects looked like, but they focused on the shared tactile experience of the objects. It was a lovely example of the ‘in the moment’ shared and accessible activities the museum aims to offer.

These programmes are facilitated in a way that isn’t reliant on memory, but rather on the thoughts and ideas of the attendees in the moment. This enables people with and without dementia to participate on an equal basis. The activities are designed and adapted for people with dementia, but they’re not about dementia – the emphasis is always on enjoying the museum and the activity together.

One man with dementia who participated had difficulties with aphasia (a language impairment). But in a tour session he was able to contribute a really interesting insight into some artwork, specifically because the facilitation style allows people the space and time they need. It’s also set up to be ‘failure-free’ – there are no wrong answers when the question is what do you think about this? Information about the artwork or objects are woven in (and people always ask for information about what they’re seeing or holding), but it’s not a lecture, it’s more a part of the discussion.

It’s this supportive and uplifting facilitation style which is key in opening up the museum and allowing equal participation. One carer who came with his wife said it’s something that’s for him as well as for her, in part because it’s not “dumbed down.” It’s still the same museum, just facilitated differently.

Dementia care is like care for any chronic health condition – it’s more than just about management but finding a way to live as well and as fully as possible, and these kinds of programmes hopefully contribute to that. One participant said: “People ask me why enjoy myself, if I’m only going to forget it. I say why not enjoy myself, even if I forget it… I’ve loved every minute.”

More details and booking can be found here!

This work forms part of a PhD funded by the Dr & Mrs Alfred Darlington Charitable Trust.

Aiming for an IDEAL world for everyone affected by dementia

IDEAL is a research project based at the University of Exeter, an Alzheimer’s Society Centre of Excellence. The centres are our biggest single investments into research to improve dementia care.

DEAL (Improving the experience of dementia and enhancing active life) aims to understand what affects the ability of people to live well with dementia.

Alzheimer’s Society has awarded funding so that researchers on the IDEAL project can continue their work for 3 more years. This extension will provide the opportunity to learn from the experiences of a wider range of people affected by dementia. This will include black, Asian and minority ethnic communities as well as people with advanced dementia.

What is the latest from IDEAL?

This week Alzheimer’s Society and the University of Exeter brought together people with dementia, researchers, medical professionals, policy makers and service managers. The event shared the latest findings from the IDEAL project around living well with dementia and shaped the next steps of the research.

The University of Exeter research team have been working closely with over 1,500 people with dementia and over 1,200 family members or friends. They want to learn how we can support people with dementia to live well.

As we learn more about what can help people affected by dementia to live well we need to ensure these findings are made a reality. This could mean a change in policy or clinical practice.

Professor Linda Clare, leading the IDEAL programme, explained what living well with dementia meant to people with the condition. The top answers included several things that many of us might take for granted – getting out and about, being fit and active and seeing friends.

We also heard about the impact that managing psychological health has on the ability to live well. Services that tackle depression, loneliness and people’s self-esteem have the potential to make the biggest impact in helping people to live well.

Working in partnership with people affected by dementia

One of the most inspiring speakers was Keith Oliver who has a diagnosis of dementia. He’s an Alzheimer’s Society ambassador and has been involved in IDEAL since it started 5 years ago.

Keith highlighted the importance of research to him personally. He finds research gives him hope for the future and aims to ‘give the 850,000 people with dementia the same ammunition (that he has) to live well with dementia’.

Every aspect of the IDEAL programme is guided by people affected by dementia. Alongside Keith, there is a group of people living with dementia and carers, known as the ‘Action on Living Well: asking you’ (ALWAYS) group. The group provide advice to researchers based on their personal experiences, skills and expertise. They have helped shape the project, kept the researchers on track and are instrumental in sharing results.

Alzheimer’s Society and IDEAL

Jeremy Hughes CEO of Alzheimer’s Society has reiterated our commitment to the IDEAL programme. We have seen it has already begun to show ‘what good looks like in dementia care’.

We are all aware of the importance of making dementia care IDEAL for people living with dementia. We must ensure the evidence gathered by this project is used as a powerful message to influence health care policy. This will help to create positive, tangible change in the day-to-day lives of people affected by dementia.

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Reflecting on our Contributions

Four years on, the ALWAYs group reflect on their contributions to dementia research at Exeter.

We are a group of people with dementia and carers that we christened the Action on Living Well: Asking You (ALWAYs) group.

Since 2014 we in ALWAYS have acted as an advisory support group to the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) research programme, and it has been a joy. We have brought our lived expertise about dementia to help shape project materials, given feedback on the way the research has been carried out, given our views on the way the data has been interpreted and given presentations about our role with the IDEAL team.

Recently, we got together to reflect on these past four years. We remembered some of the work we have done and thought quite deeply about how we feel about our role with ALWAYs. Has it been worth it? Has it made a difference to the IDEAL research? We concluded “yes”! It was great to think about this experience together.

We wrote an article and made a film to share our ideas about how researchers can make PPI (patient and public involvement) a thread that runs throughout their research. Our article is full of really practical ideas about how to achieve this – and our film shows how it feels in practice to become part of the ALWAYs team – a team that fills us with confidence, is full of respect and trust, and that provides a safety net of support to find our (sometimes quiet) voices.

So what our lessons for practice?

  • PPI should run throughout your whole project
  • It takes time and effort. Be adaptive, flexible and find ways to work differently. Build the confidence of researchers
  • Make sure you cost PPI into your research bid. This includes accessible venues, lunch and refreshments, transport (and other expenses) and payments
  • Build trust, communication and rapport between people who are involved and the research team. Small and informal helps here.
  • Work on the principle of creating a partnership between people with dementia and carers and the research team – rather than PPI being an add-on
  • Have regular contact with your PPI groups – meet face to face more than once a year, and keep in touch by email, updates and telephone calls
  • Listen and give people feedback and say what has changed because of their input. Provide regular updates including study progress.

“What this project has done is helped give me confidence and when you’re diagnosed with dementia one thing it robs you of is confidence because you give up your job, you give up often friends because they desert you… it robs you of a lot of things and what projects like this do is it begins to restore your person-hood, you as a human being.”


Our article “Reflections on PPI from the ‘Action on Living Well: Asking You (ALWAYs) advisory network of people with dementia and carers as part of the IDEAL study” can be read here.

You can watch our film “Meet the ALWAYs group” here.

We created a masterclass on ‘Involving People with Dementia and Carers in Research’ and you can watch it here.

The Improving the Experience of Dementia and Enhancing Active Life (IDEAL) study funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2. The support of the ESRC and NIHR is gratefully acknowledged.