To mark Dementia Action Week (15th-21st May 2023), here’s the second part of my two-part blog about dementia and heritage sites. If you haven't seen Part 1 yet, here's the link to it: https://www.jogillam.com/post/dementia-my-family-enjoying-our-heritage As we know, museums can be great places to gain mental stimulation and gentle exercise outside the home. Both improve well-being and help to delay the progress of dementia, whether for people who’ve always enjoyed visiting or for whom coming to your site will be a new experience. It’s important for companions to be able to enjoy sharing these experiences too.
In Part 2, I’ll be outlining how some of the human characteristics we use to engage with our audiences can be particularly applied to people living with dementia. Also, how heritage sites and their resources provide unique and invaluable opportunities to support this growing group within society.
Curiosity and discovery
One of the most lasting human traits is curiosity. Heritage sites have masses to pique and satisfy this. People affected by dementia in the early stages can and often want to learn although sometimes in different ways to before. People usually start to find retaining new information more difficult so reinforcing existing knowledge and enjoying temporary learning experiences can be the best approach. What’s new to discover and how things are interpreted may change but the processes continue to be important for well-being.
Some people, such as my grandpa, a former scientist who was diagnosed with Alzheimer’s Disease (AD), retain a strong desire for correct information even if they can’t remember it for long. Please don’t be ‘kindly’ dishonest if someone wants to know the truth about an object or a place even if the facts aren’t pleasant.
At the same time, being corrected isn’t always helpful, particularly if it reminds someone that their memory or degrees of accuracy are changing. Over time, the meaning given to things by a person affected by dementia may be different to before. Accept this as just as valuable as what a curator’s label says. For example, if a pot brings back fond memories of childhood marmalade-making, it doesn’t matter that it’s actually a canopic jar. If your team regards your site as primarily a place for educating with facts, they may need help to adjust to this.
Memory and Feelings
While memory usually declines, sensory and emotional feelings persist long into the illness. When my grandma no longer knew family members’ names or how people were related to her, she still felt happy to see them and expressed affection with hugs. The same can apply to places and objects. Your site can offer sensory experiences which will attract visitors. This could be anything from the scents and colours of a garden to the sounds and sights of an evocative film.
Reception in some senses can be dulled, exaggerated, distorted or misinterpreted as a result of dementia. A dark entrance mat may be mistaken for a puddle or a hole which acts as a physical barrier. Faces on exhibits may appear to be disturbingly alive. All my family members diagnosed with dementia stopped being able to go to some cafes because of the cacophony of sound. If someone with sensory issues can’t enjoy a gallery or non-gallery space that’s integral to an enjoyable visit, neither they nor their family will come at all. It’s therefore good to liaise with your external service providers to ensure they understand sensory needs too.
Everyone is different in terms of their sensory perceptions and the emotions and memories they trigger. My advice is to provide as many sensory experiences as possible but to make them optional/avoidable and to pre-warn. Try to have some clearly signposted low-stimulation spaces and times.
Reminiscence sessions or ‘memory’ loan boxes are the traditional heritage ‘dementia offer’. They give pleasure to lots of people. The best ones are those that don’t assume a particular collective memory but cater for cultural and generational differences. Unfortunately, these don’t always match with our museum collections so you might need to reach out for new material.
Evocative sensory themes like food and music can link with the past and the present. Examples of successful provision include Braintree District Museum’s ‘Together in Sound’ and the Alzheimer’s Society’s ‘Singing For the Brain’ programme which operates in venues across the UK. Such sessions have the added benefit of socialising, although not everyone will want to do this.[1]
Not all memories are positive. Grandpa remembered the hardship of World War Two so he didn’t want to sing patriotic wartime songs, but play him songs from ‘The Goon Show’ and he’d chuckle away. Be prepared to deal with difficult memories sensitively and to find out what memories give pleasure.
My advice is to not assume that all memories are straightforward to recall or that everyone remembers childhood best. We used to show Dad family holiday photographs to bring back happy memories. After a while, he stopped wanting to look at them because it troubled him that the memories were disappearing and he saw how much it hurt Mum that they couldn’t be shared together anymore. Dad continued to enjoy artwork both for memories of gallery visits, and because he could still appreciate their colour and form even though he couldn’t make art himself anymore. Hence his Mondrian-inspired 80th birthday cake which he identified straight away despite being considerably affected by dementia by then.
I’ve met people living with the last stage of dementia whose former jobs remained an important part of their identity even though they could no longer talk about it. A former locksmith I met had an activity board comprising locks and keys which he enjoyed using and showing to others. Your museum could bring working in a local industry or trade back to life with a recording of the machine sounds and the feel of a product.
We don’t become more generic in our personalities or interests as we age or become more ill. Consider how your site might cater for individuals by sharing specific exhibits with them or matching them with volunteers from similar backgrounds. If you can’t ask them, let people choose from a selection of objects, gauge their reactions to different displays, and talk to their companions.
When everything feels less certain or predictable, people living with dementia will appreciate being gently eased into a new environment and activity. To build familiarity at group sessions, try to make the setting and the people they interact with as consistent as possible. Empower by offering choice and flexibility, including making it easy to opt-out. How people experience different days and then, as the illness progresses, hours, will vary. Sometimes they’ll feel energetic and enquiring, at other times they’ll feel tired and seek comforting simplicity.
Help people to enjoy the now
The smell of a particular foodstuff can trigger the emotional warmth of a family meal even if the person can’t remember when they ate it before, that their mum used to make it, or anticipate it being served in a few hours’ time. Our family painfully came to understand that these connections had to become less important to us so as not to convey our sadness to the relative with memory loss. Letting this go was incredibly hard for us but if you aren’t personally connected to a visitor, it’s easier to accept and embrace the possibilities of helping someone enjoy simply living in the now.
Like using food or a mystery object to evoke memories, you can use the museum environment and collections to stimulate ‘in the present’ enjoyment. Perhaps this is the sensory pleasure of moulding clay or the “wow!” of a striking view from a window, the opportunities are endless. Don’t ‘dumb down’ but don’t worry if the pleasures are simple.
Is dementia just about the mind?
Since 1 in 14 people over the age of 65 and 1 in 6 people over the age of 80 are affected by dementia, it’s common to have disabilities that impact on or are masked by it. For example, hearing loss isn’t a cause of dementia but is known to contribute to its progression. In Dad’s final years, it was hard to understand, predict (such as how long before a toilet was needed) and treat what he was suffering physically because he couldn’t explain or hear well. It’s also stressful for carers if they can’t be sure the other person’s needs will be met, in time, or that other people will be understanding.
Dementia can affect people’s mobility. Any accommodations your site has for physical needs such as step-free access and accessible toilets, can be very helpful. As dementia progresses, a person may need shorter bursts of activity and longer periods of rest. This can also apply to full-time carers who can become very tired by their responsibilities and may be older themselves. Please make sure you have plenty of seats with arms and back support dotted around your venue.
Why wouldn’t you cater for people affected by dementia?
It doesn’t matter if a visitor can’t remember the last time they came to your gallery if they’re enjoying an activity inspired by art in front of them or happily munching a biscuit in your friendly cafe. It doesn’t matter if they keep wanting to do or say the same thing, or if every experience is wonderfully new to them. What matters is that they have the chance to do them safely and enjoyably, suited to where they are in their dementia journey.
This can make a huge difference to them and their loved ones. Your heritage site and team have unique opportunities to provide this. Why wouldn’t you? I provide training and support. Please ask. Visit https://www.jogillam.com/
[1] Until they couldn’t notice anymore, my grandparents were disturbed by being with other people affected by dementia. Dad was the same at the start. This was because most of the other dementia group members were below his then levels of conversation and because they showed him what he might be like in due course. Over time, he became worried about unfamiliar places and people. Dad became socially isolated which made him more depressed. As he gradually became less self-aware, his anxiety became more focused on not being alone.