It is it, it is me, I am still me……..somewhere. I’m glad you came because I’d forgotten about these places
(Georgia, living with Alzheimer’s disease)
Dementia is a progressive condition that can affect a person’s emotions and thinking abilities and is often viewed in terms of multiple losses. This can affect a person’s ability to communicate, make decisions, remember people, events and places, cause disorientation to time and place and many other life limiting changes. Over time, relationships are affected, especially with partners who often take on caregiving responsibilities where the person struggles to attend to their activities of daily living. This can include helping their partner with washing and dressing, eating and drinking and going to the toilet. Not something foreseen early on in their relationship and can lead to much stress for both parties. Here the dementia can take over the everyday rhythm of life for couples where remembrances of a time before the illness can be a struggle.
But there is a potential for couples to stay “attuned” when the focus on caregiving/receiving doesn’t dominate and that both take part in shared activities, which can help play to the strengths of both the person living with dementia and their partner. Activities that encourage couples to communicate and stay connected can help with their physical and emotional wellbeing and enable them to live at home together for longer.
Enjoying shared activities at home can mitigate against the social isolation often experienced which can lead to further deterioration in the person with the dementia and low mood in both, especially where other family members can be involved. Such activities as the Suitcase of Memories, a holiday multisensory reminiscence toolkit can provide pleasant distractions and reinforce happy shared memories. Suitcase of Memories includes the creation of digital films from photographs and archives with soundscapes, exploration with holiday related objects including clothes, souvenirs, maps etc and the sharing of food and drink associated with the holidays e.g. fish and chips by the sea, picnics.
We know that reminiscence can help improve communication and memory, but where a person may have difficulty with their vision, other aspects of the Suitcase can come to the fore e.g. listening to the soundscapes to help with seeing the images, to music, the sharing of food and drink (and which may help overcome some difficulties of malnutrition and dehydration that people living with dementia are at risk of) and the suitcase full of artefacts and clothes can stimulate the re-enactment of being on holiday; promoting movement and reducing the risks associated with becoming more sedentary. Also, the suitcase can use smells to help bring people back to a time in the past that can be enjoyable and something to share. We know that dementia can affect a person’s senses, but in enjoying the overall experience may help stimulate what was previously perceived as lost. It’s worth a try as everyone is affected by dementia differently!
Because holidays are usually associated with pleasurable times and the fact that we naturally reminisce over photographs and films associated with our travels, naturally occurring positive communication between the couple can be stimulated.
Our research has found that this multisensory approach can really help compensate for some of the struggles the person living with dementia has. By actively recalling holidays through such evocative ways, the stresses of the day can be temporarily relieved and some magic brought back into the couples’ lives. We found that the themes of Holidays as life; Freedom; View seen, viewpoint heard and a strengthened self-identity with younger self emerged from the experience.The experience of using the senses in the reminiscence helped show how holiday memories were intertwined with other positive times in their lives. The love of holidaying by the sea was stimulated by listening to soundscapes of the waves whilst watching the images in the digital film and sharing an ice cream. A most enjoyable time was had by all!
Well, I think you’ll be able to make a story from all of this (long pause), it’s not holidays, though is it? (pause), it’s our lives (pause), yes different countries but it’s as we’ve lived them (pause) in different places (pause) it’s our life (pause), what you have there is our life (pause) it’s our life.
Georgia’s husband, David enjoyed finger walking along one of their holiday town maps where they both shared memories of the different sights, smells and sounds of the restaurants. As his fingers walked along the map memories of fishy smells were clearly remembered and Georgia showed her displeasure through her facial expressions. Food and drink are very powerful ways to elicit memory and during the research we made hot chocolate together (based on a recipe from the café they frequented on holiday). When breaking up the chocolate to be stirred in with the spices, Georgia found her sense of smell. Recalling such memories through the senses made them feel “freer” as holidays represented a time to enjoy….
Warmth, friendliness and ability to move where you want, exploring freedom
On arriving at David and Georgia’s home one day, David announced
I wonder where we will go today!
Clearly enjoying the experience. On each visit we viewed their garden, which was just bursting into life in early Spring. As I mentioned the word ‘view’ Georgia said It was good to get her view heard. As often people who have dementia struggle to be listened to since it can take longer to process information said to them and for them to respond. This often results in them being ignored or them withdrawing from conversations. Clearly the use of the senses stimulated more naturally occurring conversation that accompanied the overall embodied experience and helped get her voice heard, something so important.
The significance of recalling multisensory aspects of holidays for the couple included moving within time and space and especially when Georgia went to their suitcase of holiday memorabilia, picked out her holiday hat, modelled it and fanned herself as if reliving the heat of Australia. She clearly reconnected with her younger self, moving about quite freely. During my last visit we watched the digital film that we had created together from photo and archival footage, while enjoying a buffet of food they had associated with their holidays which including drinking in the memories with a little drop of Kirsch! The experience was so enjoyable for them both (and myself!) that at Georgia’s suggestion, we went to their local Forget Me Not group and presented the film, shared ice creams and took props associated with different types of holidays. All couples had a thoroughly enjoyable afternoon and all voiced that they would like their own Suitcase of Memories!
Now through research at the Awen Institute, Jane Mullins is extending her research to more couples to see if using the Suitcase of Memories can have a positive impact on the mental and physical wellbeing of more couples affected by dementia. Working with Eleanor Shaw at People Speak Up, more couples will be offered the opportunity to have their own Suitcase of Memories created with them.