As part of the IDEAS Team, I support staff working with people with dementia in NHS Dumfries & Galloway. We take phone calls from health and social staff in our local area requesting advice and support, including Allied Health Professionals. I took an interesting call some months ago from an AHP who had been on a home visit and found it particularly stressful and was looking for some help. The AHP was visiting a woman in her 80s with dementia who was living with her daughter and granddaughter. The woman herself was doing well, the daughter and granddaughter not so much. The daughter was at breaking point – in her 40s, working, looking after her mum and managing a teenage daughter who loved her gran but needed her own space and didn’t really understand why gran did the things she did. The daughter commented that she didn’t know how much longer she could cope, not because of gran but because of her teenager. It gave us a lot to think about.
In Speech & Language Therapy in D&G we use the term ‘Framily’ to mean friends and family; those friends who are sometimes closer to us than family, the neighbour next door, our sister in spirit, the people we choose to be with, as a way of acknowledging that family is not just composed of blood lines but is what you make it and so looks different for every one of us and that’s ok. Being well connected socially can increase both our physical and mental wellbeing and supporting framily with communication is a key part of the SLT role. We invite people to bring members of their framily to appointments if it makes them feel more comfortable. Alzheimer Scotland do a great ‘how to’ leaflet to explain the importance of maintaining friendships that we use often.
Framily matters and it certainly did for this daughter who was trying to care for both her mother and her own daughter. We suggested a referral for support to Alzheimer Scotland and the local Carers centre and a video we use in training, narrated by Game of Thrones Actor, Iwan Rheon, that we thought might help the teenager understand a bit better. https://www.youtube.com/watch?v=HobxLbPhrMc
As it happened a few weeks later I was asked to speak to a group of S1s and 2s in my local High School, teenagers aged 12-14 years. When they walked into class some of these teens were taller than I was and pretty much every one of them was on their phone, instagramming, snapchatting or who knows what! A tough crowd, where to begin? I asked them what they thought of when they heard the word ‘dementia’. The answer surprised, and to be honest shocked me. “Harry Potter” they replied “Dementors… they suck out all your happy feelings and memories and leave you sad forever”.
Oh my, I thought, that’s just not true. I’m a big Harry Potter fan, but that really wasn’t the image I wanted them to have when they thought of dementia. How frightening, how depressing if that’s what they thought of when they heard the word. I asked if any of them had personal experience of living with someone with dementia and number of them did and during the course of the conversation they talked about how they still loved their relatives just the same. They were a thoughtful, charming and engaged group of young people. They loved seeing photos of the dementia dogs from the Alzheimer Scotland Conference, playing with twiddle muffs and hearing about the Playlist for Life – music after all is pretty crucial to most teens and they could totally relate to the use of personalised ipods. I showed them the Alzheimer Research UK website with games and quizzes and clips of teenagers talking about similar experiences and it struck me again that as AHPs we have a role in the care not only of our patients but of their wider support network and we can often be the people who are asked for advice. https://kids.alzheimersresearchuk.org/teens/
There are some great books available for children and teenagers, both factual and fictional, to help explain about dementia in a constructive and positive way. Below are some of our team favourites. Some of them are available free to families with dementia from your local Alzheimer Scotland resource centre. A complete reference list is given at the bottom of this blog. David Walliams’ book is a particular favourite, about a charming and funny relationship between Jack and his beloved grandpa who has dementia and the adventures they share together….. until one night grandpa disappears. You might know of others, in which case we’d love to hear about them.
Although I’m a bookworm, not everyone is and I particularly like this video too. It’s accompanied by some sound tips for caring for children affected by dementia that AHPs may want to signpost people towards.
“Love is a strong and powerful feeling that goes through your whole body. It’s more than just an idea. It was there long before dementia came along and it’s not going anywhere.” says the young narrator. https://www.dementiauk.org/children-and-young-people/.
There are more links to sites that feature books for children and teenagers to explain dementia below. Many libraries in Scotland will order children’s books , and in some areas adult ones too, for you free of charge for pick up at your local branch and some can be sent free and direct to your kindle or tablet.
The title of our weekly Alzheimer Scotland AHP blog is “Let’s Talk About Dementia: Never in the history of mankind did not talking about something scary make it disappear”. AHPs can play a role in helping the smallest (and sometimes tallest!) members of our framilies talk about Dementia and hopefully make it a little less scary for all.
Helen Moores-Poole is an Advanced Speech & Language Therapist working in NHS Dumfries & Galloway. As a member of the IDEAS Team, she promotes the use of Speech & Language therapy as a way to help reduce stress and distress and improve psychological wellbeing in people with dementia, their framilies and carers. The IDEAS team have a Facebook page @IDEAS Team NHS where they publish links, suggestions and advice. Helen tweets and retweets at @poole_moores.
Alzheimer Scotland & NHS Scotland Understanding Dementia, 2009, Health Scotland
Matt Elliott & James M Threadgold, When Grandma came to stay, 2015, Alzheimer’s Research UK
Matt Elliott & James M Threadgold, Grandad’s Hat, 2015, Alzheimer’s Research UK
Virginia Ironside, Visiting Gran’s New Home, 2010, Barchester Healthcare & Alzheimer Society
Virginia Ironside, Visiting Grandad’s New Home, 2010, Barchester Healthcare & Alzheimer Society
Mental Health Foundation, The milk’s in the oven, Changing Minds
David Walliams, Grandpa’s Great Escape, 2015, Harper Collins Children’s Books