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The powerful role of photographs and memories at the end of life

An in depth ethnographic research into the design of assistive reminiscence therapy technologies using personal content in long term care.

Photo of Sylvie Claes
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I am currently undertaking my masters degree in Industrial Design in Eindhoven, and in the last 6 months I have been working on a research project dealing with the power of photographs and memories at the end of life, particularly for people living with dementia in long term care.

I investigated the current reminiscence therapy practices happening between families and their loved ones in long term care, and tried to get a deeper understanding of the long term care context, the people involved and understanding their situation on an emotional level. I did this in a number of ways: guided tours through dementia care homes, immersion (observing photo viewing and sharing practices in context), creation of experience prototypes (personal photos in an iPad application for dementia, storytelling with picture cards), card sorting to understand preferred practices and experiences, and interviews and co-creation sessions. This was done in depth with three different families, and this research was focused solely on people and practices, in hopes to inform which challenges exist for designers to implement human centered and personalized assistive technologies for reminiscence therapy in the long term care context, in order to enrich current practices, and provide a more meaningful experience for people who are living with dementia in long term care. 

From my research I identified five main challenges which were derived from recurring themes throughout my research - I will briefly describe them below.

1. Technological innovation for cognitive decline

With the disease of dementia, how can novel technologies be applied to everyday life for these people considering their decreasing capabilities and diminishing ability to learn and retain new information? This deals with the design of interfaces for people living with dementia, which firstly need to be personalized, and secondly need to be accepted. Personalization deals with the fact that assistive technologies for dementia need to offer the right amount of assistance at the right time for each individual, given the wide variety of needs within this single user group. The technology should empower the person without any deskilling taking place, while still being easy to use and create the space for a meaningful interaction to occur. Acceptance deals with how pleasurable interactions can be offered to the person living with dementia, and how pleasure can be achieved through the use personal content when remembering. A pleasurable and meaningful interaction surrounding personal photos will hopefully incentivize caretakers and their loved ones to adopt novel technologies to aid reminiscence therapy and accept the system into everyday use.

2. Storytelling when Remembering: Capturing stories for varying purposes at the end of life

Capturing stories has been identified as very important at the end of life for a few reasons:

- Leaving behind a legacy for your family: The stories surrounding photographs can offer great meaning and healing for family and friends after someone has passed away, how can these stories be linked to photographs?

- Cueing your own memory: If you can tell stories you are eventually going to forget, they can be recorded and serve as a personal memory cue to listen to later down the road.

- Serving as a memory check for caretakers and their loved ones: Caretakers and psychiatrists mentioned that the stories told about the same photograph over differing periods of time can offer insight into how the memory is doing. 

3. Remembering Together: Supporting varying levels of collaboration when remembering in long term care contexts

How can assistive technologies bring people together around photographs to tell stories and create meaningful discussions between people? How can it support one-on-one reminiscence sessions between a caretaker and their loved one, how can it support one-to-many reminiscence sessions between a person living with dementia and a group (for example the other residents who surround them everyday), how can it support participatory remembering when they are alone and there is no one to share with? How are these interactions all different from one another, how can a dynamic system support these different interactions given certain contexts?

4. Designing for “near and far”: 2 contrasting family dynamics and everything in between

Some families are able to visit their loved one several times a week, other families only twice a month. How can assistive technologies for reminiscence support meaningful face to face interactions for the "near", and also support meaningful interactions remotely -"far" (involving families in their loved one's life when they cannot be present physically).

5. “Hands on Design”: Combining physical and digital elements to support participatory remembering

With most photos being in a digital format nowadays, there is a great potential for assistive technologies to play a heavy role in providing reminiscence therapy using digital photographs. However, what is the role of physicality in assistive technologies, and how can physical objects and photographs come together with use of assistive technologies to provide a more pleasurable and meaningful tactile experience for people living with dementia? The importance of tactile stimulation for people living with dementia cannot be understated, with studies showing improvement in long-term and short-term memory using direct tactile stimulation. Physicality in designing for dementia can take different forms. One form is the use of meaningful personal physical objects in reminiscence therapy which can often be more stimulating for a PLWD than something shown on a screen. However, with the use of physical objects technology does not need to be excluded, but can enhance the interaction with a physical object through use of things like augmented reality. On the other hand, tangible user interfaces in conjunction with assistive technologies can improve accessibility of technologies for people living with cognitive disabilities.

What is a provocation or insight that might inspire others during this challenge?

How can assistive reminiscence therapy technologies for people living with dementia: Offer meaningful personalized content for them to view? Connect them with their personal history through photographs? Connect them with the people surrounding them? Connect them with families who are far away? Create meaningful and participatory discussion/interaction? Enrich their everyday life? Be pleasurable?

Tell us about your work experience:

I have completed a bachelor's degree in Industrial Design Engineering, and am now halfway through a master's degree in Industrial Design at the Technical University of Eindhoven in the Netherlands.


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