Memory work - Museums Association

Memory work

A growing number of museums are helping dementia sufferers and gathering evidence about the value of such work, writes Geraldine Kendall
“I drive here with this sad person with dementia and I take home my husband,” says the wife of one participant in the Football Memories Project, a joint initiative between the Scottish Football Museum and Alzheimer Scotland.

The project was first piloted in 2009 and has become a lifeline for many male dementia sufferers. Nearly 50 Football Memories groups, which use online records and photographs supplied by the museum, now operate across Scotland.

Healthcare practitioners and relatives have been impressed by the remarkable level of detail participants could recall about players’ names, matches and goals from the distant past. The benefits work both ways – stories told by the men are captured and added to the online database, creating a unique record of footballing heritage.

Over the past few years, museums across the UK have become more involved in art and reminiscence therapy and a number now have programmes specifically tailored to people suffering from Alzheimer’s and other forms of dementia.
For sufferers and their families, dementia is a cruel and distressing condition – the prognosis is terminal and, in tandem with memory loss and confusion, patients can become increasingly isolated, depressed and unable to control or articulate their emotions. Relatives often feel frustrated and demoralised, losing sight of the person they once knew as they cope with the burden of everyday care.

There is a wealth of anecdotal evidence that suggests cultural engagement can be therapeutic for sufferers and their carers. With cases of dementia expected to top one million by 2021, the museum sector could play an increasingly significant role as a complementary partner to healthcare providers.

But, until recently, there has been a lack of research into the clinical impact that cultural participation has on health and wellbeing.

Research-backed improvements

One report that hopes to stimulate further research is Reawakening the Mind, a large-scale evaluation study published earlier this year by the UK charity Arts 4 Dementia (A4D).

The report was for its initiative, the London Arts Challenge – a series of workshops for people with early- to mid-stage dementia held last year involving museums, galleries and other arts organisations.

The scheme was independently evaluated using methodology devised by Paul Camic, research director at Canterbury Christ Church University’s applied psychology department. The results show that the arts activities had a sustained impact on the wellbeing and fulfilment of the 128 dementia sufferers who took part.

According to carers, 94% of participants stayed “energised, unstressed, happy and alert” overnight after attending a workshop, 80% for three days and 60% for a week.

Stimulating sufferers

Furthermore, 73% reported developing new skills, three quarters of participants were keener to socialise and 81% felt more confident after taking part in the project.

“The workshops absolutely transformed the lives of people who otherwise stayed at home, isolated and afraid to go out,” says Veronica Franklin Gould, the founder of A4D. “They restored people’s self-esteem and gave them their social lives back.”

Those benefits were felt by family members and other carers too, says Camic.

“There are moments when they become engaged in the activity, smiling, nodding along to the discussion in a way they might not have been for months. Those moments help the family get a sense of reconnection with their loved one.

“For professional carers, they might be able to see areas where they can make a connection on a regular basis,” adds Camic. “It enables them to be more hopeful that they can make a difference in that person’s life.”

Gould and many others believe there is a strong indication that such activities also have an impact on brain function. “For people in the early stages of dementia, the creative part of the brain is undamaged for many years to come. It’s clear to us that creative therapy could slow cognitive decline and maximise aspects of brain function.”

Tactile triggers

There are a number of reasons why museums and galleries are ideal spaces to host dementia-focused practice, says Camic.

“First of all, they’re stimulating places,” he says. “Looking at an object brings about an opportunity to reflect on what it is, what it means to me. Trying to remember something might be challenging – reacting in the moment is more effective.”

Other studies have backed this up, with one piece of research showing that tactile interaction with museum objects can trigger memories in ways that other information-bearing materials do not.

Paintings and museum artefacts also have a strong emotional component, adds Camic. This is important because “it is often easier getting at emotions rather than thoughts in people with dementia”.

Camic says that museum buildings are also inspirational architectural spaces, which can enrich participation in other creative activities.

“On a more pragmatic level, I would also say that museums are very accessible. Most are low cost or free to enter and every medium-sized town has one,” he says.

Opinion varies as to whether receptive activity, such as discussing a painting or object, or creative activity, like drawing or photography, has the greatest impact. Both are effective in different ways, says Camic.

It’s important to consider who will be attending the sessions, he adds, pointing to one Scandinavian study that showed that men preferred receptive activity while women were more likely to feel they needed to be “doing something”.

To work with vulnerable people who have complex needs, museum staff need to be trained in dementia-related behaviour and how to interact with people who have the condition, as well as being sensitive to signs of distress.

“It’s not for the fainthearted,” says Gillian Wolfe, the director of learning at the Dulwich Picture Gallery. The south London gallery has been a long-time pioneer of museum work with older people and is one of the partners in the A4D study.

“Our health and safety risk analysis stretches out past our grounds,” Wolfe says. “Initially, we had a few frights. People with dementia often wander but their families are sometimes not as honest about this as they should be.”

Taking risks

Vital communication tips include avoiding long introductions to sessions, looking into the participant’s eyes and always addressing them by name, as well as allowing them a moment of silence to collect their thoughts before they answer.

“High-quality refreshments are also important,” says Wolfe. “Older people like tea in cups and saucers. We also provide fresh fruit because their diets are often quite poor.”

Despite the challenges, people with dementia don’t want to be “do-gooded” or infantilised. Camic believes museums should not shy away from using material that might be darker or more challenging.

“In one project, there was a painting of a death scene which staff thought might not be appropriate given the fact that participants are closer to death. In fact, it provoked the most discussion among the group.”

The museum sector may have woken up to the potential of dementia-focused work, but the next step is raising greater awareness of the resources it offers with healthcare providers and carers.

A report this year for the Royal Society for Public Health, which explores the potential of museums and art galleries for public health interventions, advocates creating an overarching framework for museum and gallery involvement in public health in order to signpost these resources to healthcare bodies.

Museums themselves are also raising awareness in this area. National Museums Liverpool’s (NML) House of Memories scheme has highlighted the benefits of cultural activity for dementia sufferers to the health and social care community (see box).

In the coming years, therapeutic practice could be incorporated into museum studies courses and continuing professional development programmes for staff, and there is also the potential to train community volunteers.

For institutions looking to build programmes of their own, Wolfe warns against short-termism. “You see some local authorities doing a six-week programme just to tick a box. To work it needs to be consistent.”

In spite of these ambitious steps forward, gerontologist Desmond O’Neill, director of the Centre for Ageing, Neuroscience and the Humanities in Dublin, which has researched the impact of the arts on the health of older people, strikes a note of realism.

Robust evidence

“Our exploration of the science is at baby steps,” he says. “I’m a little cautious about making far-reaching claims. One of the challenges is separating out controlled trials. If you take people for a cultural outing, is it the culture or the outing itself that has an impact on their wellbeing?”

Scientifically robust evidence can be difficult to achieve, agrees Wolfe. “To get real hard evidence you would need a CCTV camera in people’s homes,” she says.

“Another problem is that some participants have so little in their lives that if you give them anything at all it’s electrifying for them and they’ll mark it 12 out of 10. We need to focus on the long-term effects of how their lives have been changed.”

Camic believes that, while rigorous evaluation is vital, healthcare-style measurements may not always be the best approach. “In a healthcare system, evaluation is about standardisation. In a museum it can’t be, because the work differs so widely.”

But there’s no doubt that the work can have a significant impact. “One man’s mother, who was on one of our programmes, died before he got to see her,” says Wolfe.

“He collapsed in tears when he saw the drawings she’d been working on – they gave him an insight into what she was thinking about in the last days before she died.”

Geraldine Kendall is a freelance journalist.

The Therapeutic Museum is one of the themes at this year’s Museums Association conference in Liverpool, 11-12 November

Getting hold of the past

National Museums Liverpool’s (NML) award-winning House of Memories initiative, which receives funding from the Department for Health and other clinical commissioning groups, has so far reached out to over 3,000 dementia carers in the north west and north east. It now hopes to expand to the Midlands.

The scheme came about as NML looked at ways to increase its provision for older visitors.

“People’s access to the cultural offer becomes totally reliant on the social care sector as dementia progresses, but we realised that carers often haven’t considered us as a resource they can use,” says Carol Rogers, executive director, education, communities and visitors at NML.

“The last thing people with dementia lose is their long-term memory – often of things their children can’t relate to. What [patients] want is meaningful things to do to connect with the past, and museums do that every day.”

House of Memories offers training days in which participants can explore the collections and learn how to engage with people living with dementia using objects from the museum.

It also offers free practical resources that carers can access on an ongoing basis, including a memory suitcase loan service and memory walk guides.  

It has been vital for NML to take a different approach to seeking investment from the healthcare sector. “We have to articulate impact in a language that the healthcare sector can connect with. We’ve put a lot of energy into stretching our own knowledge,” says Rogers.

The programme has worked with university research partners and clinical experts, and may shortly be subject to an evaluation project at the Arts and Humanities Research Council. A digital House of Memories pilot project should be in operation by the end of the year.

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