Photo Albums too much effort?

Cathy McStay

New member
Nov 8, 2018
5
0
Hi, I am a final year product design student. I have been researching Dementia for 6 months now striving to come up with a product or service to help family care givers and people with Dementia make the most of the change after diagnosis. I think this platform itself is really great for all types of people interested or dealing with dementia.

Below are a few ideas I have been interested in and would appreciate some honest feedback:

  • A To do list (bucket list - hate this terminology) prompt. This could be a blank list/s along with an example list of short term small things or long term larger things people may want to do before their time comes. My aim here is to provide a positive motivation to ‘live on’ and enjoy life whilst giving the family an idea of what the person with dementia would like to do. This could aid the grieving process also because if there are things the person didn’t get to do, the family could go ahead and do them as a ‘favour’, to the person with dementia.

  • Secondly, I would like to come up with a product that cuts out any hassel with making memory photo books. This could be the combination of the polaroid camera function with instant prints as well as recordable sound bytes that can be attached to the pictures (in one product). These instant photos and sound bytes would then be stuck into a scrap book as a ‘work in progress’. The aim of this part of the pack would be to act as a hobby or ‘project’ for the person with dementia as well as remind them of these ‘recent’, times as the disease develops. When the person with dementia passes, this book will then act as memory book for the family care givers with high sentimental value as it will include photos and voice snippets from the person with dementia. This product would be designed so that it is simple to use.
  • The third thing I had thought about including in the pack was a jar and good memory record notes for the family/ caregiver to use. For example, when the family member with dementia said something interesting about their life years ago or said something funny or nice about someone, the family caregiver could write this on the memory note, fold it and put it into the jar. The aim would be to collect memory’s (could be done by all family and friends that be with the person with dementia) so that when the person passes away, the family have a jar filled with memories from different people about the person with dementia.

Thanks Very Much, All opinions and comments will be taken into consideration!
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Cathy, good luck with your project.

What is the "platform" to which you refer in your first paragraph, please? Are you referring to Talking Point, or to your project? I am not clear.

Regarding the list idea: I assume this would be for the family/carers, not for the PWD (person with dementia)? Bear in mind that many PWDs can no longer read, or if they can read, they don't take in/process information. Many, but not all, also have short-term memory impairment, so if they can read, they won't recall what they have read; nor will they recall there is a list to consult. You might want to take this into consideration regarding where such a list would be displayed or stored. I would also add that for years now my mother has not been able to "read" information on a mobile, computer, or other device's screen. I am sure it is part of her visual-spatial problems and processing problems from the dementia, not just her poor vision, as she can "read" something on paper.

I also hope you will be considering providing funding, transportation, and practical assistance, to accomplish those "bucket list" items. It's all very well for my mother to say she would like to go on a journey to Europe or even to the local bookstore, but it's another matter entirely to get her there. If you would like to find someone to take her to the bookstore, that would be great, but I'm not doing it on my own on top of my caring responsibilities, if you see what I mean. Perhaps you can partner with Age UK or the Alzheimer's Society or local charities or even start one yourself, to provide help. Now in the earlier stages, this might have been possible. I have another family member who is much earlier on and more mobile and this might, in fact, work to a limited degree with that person.

I do quite like your memory book idea, especially as it includes voice recordings, and perhaps video, as well as photographs. If you can find a way to make this easy and quick to do, and with no hassle, then I am all for it. Again, I don't think I would do this with my mother now (she is still mobile and verbal but I doubt I want to remember how she is or going forward), but earlier on, quite possibly. With the family member who is less advanced, definitely.

I am not sure what I think about the memory jar idea. I think it sounds a lovely idea and it's not something I would have thought up, so I like the idea. I will have to consider this.

Do be aware that by the time a formal diagnosis happens, many people with dementia have already had the disease for months or years and may be well past the early stages. Many also have anosognosia, which means they have no awareness/comprehension (and no ability of being aware or comprehending due to the brain damage) of having dementia, and it generally does no favours to discuss having the disease, so be careful how you "label" and market your ideas to the PWDs themselves.

I hope I am not being too discouraging. Many people who care for someone with dementia, especially live-in carers who are the only person 24/7 and dealing with incredibly stressful and demanding situations, are overwhelmed and honestly need practical help and respite more than anything else, hence my initial reaction. However, you are addressing emotional needs and that is a fair and legitimate point. I have often wished that I had the energy and patience, earlier on, to try more things like photographs and albums and so forth with my mother, while she would have been capable of talking about certain things in her life. Much of that is now not possible, and it may not have been previously, but I would have liked to have tried, so thank you for your thoughtful project. Best of luck to you.
 

Beate

Registered User
May 21, 2014
12,179
0
London
I'll be short and sweet:

I don't think much of ideas 1 and 3, for the reasons that Amy explained so eloquently, but I think idea number 2 is really cool and has potential. I don't know how you attach sound bites to a paper album, but if that's possible, don't limit it to people with dementia! :)
 

Louise7

Volunteer Host
Mar 25, 2016
4,683
0
With regards to idea 2, there are already talking photo albums available where sounds can be added to photos:

https://www.alzproducts.co.uk/talking-photo-album-for-dementia

Also sold by the Alzheimer's Society (currently sold out)

https://shop.alzheimers.org.uk/daily-living-aids/talking-photo-album

The benefit of the above type of photo album is that people wouldn't need to buy a polaroid camera if they didn't already have one, and would also not need to stick a sound byte separately onto a page as these are already inbuilt into the album. I might have misunderstood what you are proposing (I'm not very techy) but it seems to me that what you are suggesting would be more, not less, hassle compared to just sticking a photo in an album and pressing a button to record sound. I can see that your version would produce 'instant' photos but that's not necessarily a 'must have' for a product that is designed to be a memory prompt after the event. As a carer you tend to want simple options with as little hassle involved as possible.
 

BeardyD

Registered User
Jan 19, 2016
89
0
I wish you luck with your ideas and I hope you can come up with something that makes life better for everyone. I wonder whether targeting dementia is too wide ranging. Measles is measles, some people get it worse than others and occasionally there can be side effects but it's basically the same condition. Dementia can be any of 100 recognised conditions, in many combinations, affecting people aged under 50 to 100+ with constantly declining abilities, living in different conditions and with different levels of support. Something that would help a few percent of the people for a few years would be a success.

I would find the to-do list frustrating. My wife and I are in our 60's. Gap-years weren't the norm in our younger days so this is the time we should be doing things. Two years ago we stayed in a railway carriage on a heritage line. My wife likes trains and really enjoyed it, but a month later the memory was gone and soon after the photographs were meaningless to her. I retain the memory but that only emphasises what she / we have lost. Now if we go out she cannot enjoy the anticipation, gets upset because she doesn't know why she's there and before we get home forgets that she has been out. I sometimes hear the phrase "Helping people with dementia to create memories" and I just want to shout "NO, NO, NO".

The memory photo book is a good idea but couldn't a camera or a phone be used? For family and friends producing memories of the person is important. For the person with dementia photos, videos and notes are meaningless without context and in the mid/later stages the person will not have that context. Although there will be exceptions many people find that from very early on the person with dementia cannot learn to use something new.

I've seen the memory jar idea at funerals and know some people who have found it a great comfort. Personally it's not something I'd be comfortable doing but that's just me. Despite common belief, people's memory of the distant past can be jumbled, confused, even totally wrong but there is no-one there to contradict the memory. This could lead to "interesting" submissions to the memory jar.

One successful product we used was one I designed myself (says he modestly). My wife was used to a busy life driven by her diary, but very early on she lost all concept of time and would ring people at 4am rather than 4pm even though she was in bed and it was dark outside. I used a tablet computer to produce a dementia clock emphasising in colours, pictures and words what stage of the day it was. Nothing unusual there but it also showed her activities for the day taken from her on-line diary so that she could see them when she woke up and not panic. It was to solve a particular need and only useful for a couple of years but it was worth it.
 

mumsgone

Registered User
Dec 23, 2015
924
0
my mother was in a care home prior to her demise and in the old fashioned way of the world i made up a photograph album with pics of family and pets etc. this was helpful to her as we could sit and look through it from time to time and also to the care staff if she mentioned someone they could find them in the book. It's ok for people to research dementia but unless you've cared for someone the comprehension of what the person is going through and their family is negligible. Would also say things need to be kept as simple as possible..
 

Cathy McStay

New member
Nov 8, 2018
5
0
I wish you luck with your ideas and I hope you can come up with something that makes life better for everyone. I wonder whether targeting dementia is too wide ranging. Measles is measles, some people get it worse than others and occasionally there can be side effects but it's basically the same condition. Dementia can be any of 100 recognised conditions, in many combinations, affecting people aged under 50 to 100+ with constantly declining abilities, living in different conditions and with different levels of support. Something that would help a few percent of the people for a few years would be a success.

I would find the to-do list frustrating. My wife and I are in our 60's. Gap-years weren't the norm in our younger days so this is the time we should be doing things. Two years ago we stayed in a railway carriage on a heritage line. My wife likes trains and really enjoyed it, but a month later the memory was gone and soon after the photographs were meaningless to her. I retain the memory but that only emphasises what she / we have lost. Now if we go out she cannot enjoy the anticipation, gets upset because she doesn't know why she's there and before we get home forgets that she has been out. I sometimes hear the phrase "Helping people with dementia to create memories" and I just want to shout "NO, NO, NO".

The memory photo book is a good idea but couldn't a camera or a phone be used? For family and friends producing memories of the person is important. For the person with dementia photos, videos and notes are meaningless without context and in the mid/later stages the person will not have that context. Although there will be exceptions many people find that from very early on the person with dementia cannot learn to use something new.

I've seen the memory jar idea at funerals and know some people who have found it a great comfort. Personally it's not something I'd be comfortable doing but that's just me. Despite common belief, people's memory of the distant past can be jumbled, confused, even totally wrong but there is no-one there to contradict the memory. This could lead to "interesting" submissions to the memory jar.

One successful product we used was one I designed myself (says he modestly). My wife was used to a busy life driven by her diary, but very early on she lost all concept of time and would ring people at 4am rather than 4pm even though she was in bed and it was dark outside. I used a tablet computer to produce a dementia clock emphasising in colours, pictures and words what stage of the day it was. Nothing unusual there but it also showed her activities for the day taken from her on-line diary so that she could see them when she woke up and not panic. It was to solve a particular need and only useful for a couple of years but it was worth it.

Hi BeardyD, I really appreciate your feedback i have taken on board your comments with my project, they were really useful and eye opening.

Best Regards,
Cathy