dementia design project - we would like to hear from you

Gubing Wang

New member
May 12, 2020
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I am Gubing Wang, a PhD student from Industrial Design Engineering faculty in TU Delft, and my research is about personalising dementia care through design. I initiated this research topic because my grandma has been diagnosed with a combination of vascular dementia and Alzheimer’s disease and my grandpa has started to show symptoms of forgetfulness. Spending my childhood with my grandparents make they so dear to me, and I wanted to do something for them. Throughout my PhD, I have encountered non-pharmacological interventions, such as music therapy; how to co-design with people living with dementia; the remaining capabilities of older adults; data-enabled design etc. In addition, I developed observant eyes and empathetic mindset, as well as an in-depth understanding about dementia care. Because I am studying abroad, each year I can only spend a few weeks with them. During my visit, I applied what I have learned and explored how helpful are they for my grandparents. I would like to share my stories about caring for my grandparents, and hope these stories could help the others who are caring for their loved ones.

Context
Before we start, I’d like to introduce the context. My grandparents are living at home with a full-time caregiver and a part-time caregiver. Grandma has reached late stage of dementia (according to the three-stage model). Even though she is not able to recognise grandpa and me anymore, and she has difficulty to communicate fluently, she still has her joys and sorrows every moment. Grandma is not able to walk by herself; a full-time caregiver is hired to assist her with going to the bathroom, eating, and washing. Yet, she is still able to do quite a few activities with her hands. I notice that she tends to be depressed sometimes, and says “I am stupid and useless now” with tears in her eyes, which breaks grandpa’s heart.

Problem statements
I want to increase the number of joyful moments in the daily life of grandma, and to break it down, I formulated a few problem statements:

What are the triggers of negative mood for grandma? Let’s call them negative triggers.

What are the triggers of positive mood for grandma? Let’s call them positive triggers.

How to effectively avoid the negative triggers and introduce positive triggers in the caring process for grandma?

The answers to the problem statements is an on-going list, I will share the items on the list one-by-one under the frame of the Need-driven Dementia-compromised Behavioural (NDB) model [ref]. For each item on the list, I will describe my approach, which might be more useful than the actual outcome, because each person living with dementia is different. Please let me know if you have better approaches and ideas!
 
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Gubing Wang

New member
May 12, 2020
2
0
Triggers of positive mood and how to introduce them
Re-introduce the hobby
Grandma has been a flowers lover, and one of her hobbies is gardening. I wonder if bringing some flowers to her could create more happy moments in her life. Can she still notice them? I showed grandma a list of flower pictures, surprisingly, she consistently commented on the pink flowers as “pretty”, and flowers of other colours as “alright”. She is able to indicate what kinds of flowers she likes; despite she has a very limited vocabulary now [cognitive factors]. I then bought three pots of pink flowers and put them in the living room, bedroom and bathroom respectively. These are the three rooms that grandma stays for most of the day [physical environment]. In this way, the flowers will be always within her sight. Anytime when she is in a low mood, I point the flowers to her and say: “do you like these flowers?” Grandma usually says: “how pretty, they are grown by me.” I then bring the flowers to her to let her closely examine it, touch it, and smell it. Normally she says: “oh put it back.” Despite the “put it back” commend, she gradually comes out of the negative mood. Previously, I have tried to encourage grandma to “paint” flowers using AquaPaint and it was not successful. AquaPaint is a set of “blank” papers which will show their underlying pictures when brushed over with water. In the hindsight, AquaPaint might be an abstract and new activity for grandma. It takes some time for the colours to reveal after each stroke, and it was not clear what the final outcome could be, so grandma gets distracted easily [cognitive factors]. The exploration nature of AquaPaint might be more suitable for people who are in the moderate stages of dementia.

Insights
Grandma is able to indicate what she likes, and I should lower the threshold for her to indicate her preferences. It might not work if I ask “what kinds of flowers do you like?”, since it is a complex sentence for her to understand, and grandma might not able to think of the word “pink”.

Did you know
Nature has been found to have a curative effect on humanity in general [ref]. A variety of horticultural therapies has been applied to people living with dementia [ref]. what are the hobbies of your loved one?