The sad truth is that it is all too likely our elderly relatives will suffer from memory loss. There are currently around 850,000 people with dementia in the UK and this is increasing year on year. One in six people over the age of 80 have dementia, with 70 per cent of people in care homes having severe memory problems.
How can you help the people you love avoid the heartache of memory loss? Care givers and family members agree that talking through a memory book helps the person retrieve precious memories, as well as being a rewarding activity for all parties.
The UK Dementia Directory sets out that: “A memory book contains a collection of photographs, pictures and descriptions placed in a book to help the person or others to remember a person’s life’s activities or interests. This can be a great aid to stimulating the memories of a person with dementia. Photos of friends and family members, events in their life, holidays or work can all be included.”
Prior to creating our Dementia Memory Book we did lots of research to understand how to make it as useful as possible for the person suffering from memory loss in old age.
We recruited Adam Welton to develop the design – he is a natural fit having won the Creative Conscience Gold Service Award for his ﬁnal major project when studying Graphic Design at University. For this project he investigated whether design could help those suffering from dementia.
Adam explains: “I was motivated because my grandfather had been losing his memory for many years. After a lot of ﬁrst hand research I discovered that if a patient is reminded of a memory or person with a visual aid, like a photo, it can help trigger memories. In creating the designs for this memory book, I took into consideration colours that are warm and welcoming, typography for legibility, and an easy layout for people to take in the information.”
You can see more of Adam’s work on his website.
From all this research we established the following . . .
Here are our 10 key points for making a memory book to help in the fight against memory loss:
Looking at each point in more detail . . .
1. The amount of content depends on the stage of the disease
When thinking about what to write, do consider the stage of the disease the person is in.
Best Alzhiemer’s Products, in their Life Stories for Persons with Alzheimer’s Disease: Making a Memory Book, include advice from Connie Lucas, Program Specialist, Alzheimer’s Association, Greater Iowa Chapter. She says: “The amount of decoration [and content] on each page would depend on what stage of the disease the person is in. Less is usually better than more. Too much decoration makes it harder to concentrate on the content.”
Montessori for Dementia and Ageing includes a resource attributed to Gail Elliot, a Gerontologist & Dementia specialist and the Founder and CEO of Dementiability Enterprises Inc. She is passionate about changing the face of dementia, and dementia care. She advises: “The size of the text and the photos pasted into the book need to be large enough for the user to clearly see. Since each person is unique – so too is the story, the details and the content of each memory book.”
And related to this . . .
2. Go for one picture per page
Best Alzhiemer’s Products advise just one picture per page.
UK Dementia Directory state: “When creating a memory book for somebody with Alzheimer’s or dementia remember their condition. Using extra-large photos of people’s faces will help the person to see the photos better along with making easier recognition of the person in the photo.”
We have therefore only included spreads (facing pages) that have one or two pictures per spread. When you are making your memory book, if you would like to include more pictures and feel the person you are doing it for will not find this confusing, then we recommend using the normal memory book product and not the Dementia Memory Book. You can then use as many photos as you would like.
3. Photos are best, but be creative
Photos help jog our memories, but there may not always be photos for each event. If a photo isn’t available, there may be a picture on the internet, or maybe just have words describing the memory.
If you are using a photo off the internet, make sure you have permission – this article has some good advice on the best way to be sure you are legally using online photos.
Also, don’t forget the scanning function on your printer – family drawings, cuttings of pictures from magazines and newspapers etc can all be scanned and used.
4. Try both your scanner and a photoscan app to see which works best
Many valuable memories will be captured in old photographs. One of the most rewarding bits of the whole exercise for me was uploading these – firstly so I knew they would be safe for future generations and secondly because we identified relatives and events that I wasn’t aware of.
I found that some photos came out best when I scanned them on my printer at 600 dpi, whilst others worked best when I photographed them with my phone. I used Google’s PhotoScan app, but there are many available - this article gives you some suggestions. There didn’t seem to be a pattern for which method worked best – I just used both options and selected the best outcome.
5. Keep photo captions short
Advice is, the more advanced the stage, the simpler the caption needs to be.
Best Alzhiemer’s Products state “Caption each page. Early stage (stage 5) example: “Connie’s first day of kindergarten at Saylor school in Des Moines”. Middle Stage (Stage 6) example: “Connie’s first day at Saylor school.” Late Stage (Stage 7) example: “Connie loved school”.
UK Dementia Directory advise writing short descriptions alongside the photos, naming friends and family and mentioning the activity they are doing e.g. ‘Here is your brother Steve and he is cycling a red bike.’
6. Write in the first person
To fully understand the process, and to ensure the design was right, and to help write the guides for users, I created a book for my Mum. Using the first person felt strange when writing on her behalf – typing ‘My wedding to James’ and ‘I loved to sew’ was just odd.
But Best Alzhiemer’s Products says to write information in the first person. And it does makes sense when you put yourself in the shoes of the person losing their memory actually reading the book. I can appreciate that using their name or even ‘you’ might create confusion.
7. Involve the person in the creation of their book
“Making a memory book can be a great way for the person with dementia to recollect their past and present life. When making the book it becomes a great activity. The person’s memories can be shared with friends and family. It’s a great way to help a person with dementia to recollect their memories and stimulate their mind. It also helps the person with communication through talking about what’s in the book”, according to UK Dementia Directory.
Dementia UK have a lot of very helpful advice on this topic:
“Involve the person with dementia as much as possible in the process so that they feel a sense of ownership. When life stories are created collaboratively, they are more likely to reflect the person’s wishes and preferences.
Talk together to learn more about the person’s history, help them where needed, and add the information together so they can see their story forming.
If someone finds it difficult to communicate their life story, the people who know them best may be able to provide the key information. You can also try to prompt by using familiar photos of people or places.
Reflecting on our lives can be emotional, so sensitivity is needed. Avoid unhappy or disturbing events such as past trauma and failed relationships, which might cause distress. Think carefully about what information the person would want to be shared in their life story.
Go with the flow and let the person talk about an aspect of their life they’re most comfortable with – you don’t have to start at the beginning!
Don’t ask people directly to remember or recall events as this may be upsetting if they can’t remember.
Take breaks so it doesn’t become exhausting and complete the story at your own pace; it might take days, weeks or months.
Take one topic at a time so it doesn’t become overwhelming. Topics we suggest focusing on are: their childhood, family and friends, their working life, significant places and events, hobbies/activities, preferences with their appearance, food, routines and music/TV and general likes and dislikes.”
Best Alzhiemer’s Products also address this: “All the elements of the life story provide important tools for improving communication, making activities meaningful, preventing boredom, honoring the person’s life and offering positive diversion. When families come together to create the life story book, it can be a healing tool and a celebration of their loved one’s life.”
8. Tell them what is so special to you about them
Best Alzhiemer’s Products say, “Write one page where you tell them what is so special to you about them.” This feels like a lovely way to honour a loved one and is worth considering.
9. Consider including useful facts too
“A memory book can be used to help people who are living with dementia to remember details that are important in the present – such details about what they do each day and as likes and dislikes” according to Montessori for Dementia and Ageing.
Consider whether to include useful facts too e.g. daily routine / what I like to eat etc?
10. Start your memory book early
Alzheimer’s Arkansas: “The Memory Book tells about likes, dislikes, interests, work history and it identifies family and friends. It is recommended that this project be started as soon as possible after the diagnosis of Alzheimer’s has been made.”
I liked these words on the Mayo Clinic website: “Life is like a tapestry, woven from memories of people and events. Your unique tapestry reminds you of who you are, where you've been and what you've done.
Early in the disease, individuals with Alzheimer's disease have difficulty making new memories, but memories from early in life are often relatively preserved. Sadly, Alzheimer's disease gradually takes these memories. If you're caring for a loved one who has Alzheimer's, you can help him or her manage the onset of memory loss by creating a tangible bank of memories. A memory box or bank might also help reduce feelings of depression, which can occur with dementia.”
And these from Connie Lucas, of the Alzheimer’s Association: “It is a funny thing about Alzheimer’s that memories are lost in reverse order; memories formed recently are more fleeting than those from many years ago. Alzheimer’s disease starts in the hippocampus, the region of the brain responsible for putting experiences into memory. When the hippocampus is damaged, recent experiences never have a chance to become memories. Not until much later in the disease’s progression does it affect the regions in the brain in which older memories are stored, and so those memories are available even into later stages of the disease. Because of this, reminiscence and Alzheimer’s disease go hand-in-hand.”
Taking all of the advice on board, and through discussions with family members that are losing their memory in old age, we have put our online Dementia Memory Book together – we hope it will help you and your loved ones preserve those precious memories.
Written by Clare McDougall who does the coms and numbers for memory-books.com