My research project on designing for personalised dementia care: Part III
A simple intervention to improve grandma’s wellbeing.
This intervention is too simple to be reported in any academic journals. Yet, the mindset and the approach behind might be inspirational for many family members caring for their loved ones.
I start with understanding grandma’s depression and agitation with the help of Need-driven Dementia-Compromised Behaviour (NDB) model (discussed in Part I). Guided by this model (visualized in Figure 1), I first outlined the background factors for grandma; and since the proximal factors change with time, location and other parameters, they are outlined later on for each specific intervention where relevant.
Then I pick one insight from the background and proximal factors as the starting point for developing the intervention. I pay attention to all the factors where relevant while developing the concept. This is to shape the intervention to fit the capabilities of grandma and the environment she is in.
With the help of design for ageing, co-design, and data-enabled design (discussed in Part II), I was able to gather relevant information and knowledge efficient enough to create a personal profile for grandma based on the NDB model and to develop the personalized intervention accordingly.
Neurological factors
Grandma is not able to take an MRI because of an implant she has (due to a fall years ago). Hence we do not have up-to-date MRI scans for grandma to be able to determine the neurological factors.
Cognitive factors
With language, grandma has a limited vocabulary, yet, she can express what she wants and likes (e.g. I am tired; it’s so cold; this looks nice)
The attention span of my grandma varies depending on what she is interacting with: she has a longer attention span for something that she is familiar with or moving than something that is abstract, new and stationary.
As for memory, grandma is not able to remember what she said just now, but she is able to remember things happened in the past.
Regarding the senses, it is difficult to carry out a conventional vision or hearing test with grandma, so I observe how grandma interacts with sensory stimuli around her to evaluate her remaining sensory capabilities. Grandma can still see well, she can recognize her wheelchair two-hundred meters away; when I give some flowers for her to sniff, she responded they smell lovely; grandma is still able to hear me provided that I increase my volume; grandma becomes very picky on food, commenting most of the food as bitter, it could be her brain region in charge of taste is damaged or a digestion issue (the doctor does not have a conclusion); and with touch, grandma can notice a gentle touch from me, and folding tissues is one of the activities she usually does.
General health factors
Grandma has a few bone fractures due to a car accident and a few falls, and these are located in her hips, ribs, wrist and chin. From these fractures, she has limited mobility, she is able to walk slowly with someone supporting her left arm.
Grandma developed arthritis, and together with the bone fractures, they give pain to her in cloudy and rainy weather. The caregiver says in these weathers, grandma normally cannot sleep well (since I am not with grandma all the time, talking with the caregiver is very helpful).
From the car accident, grandma also has her spleen removed, and spleen removal could lead to an increase in the number of platelets, thus grandma is more suspectable to blood clotting.
Grandma sometimes feels dizzy, and this symptom has been with her for years. She has visited a few doctors, yet the reason for this symptom is still unclear. The physical discomfort has been identified to negatively influence our emotions and moods; let alone people living with dementia, who have difficulty with rationalizing their discomfort.
It is a common care practice to check if the person living with dementia is suffering from any form of discomfort before trying other means to alleviate the symptoms when the person exhibits behaviours such as aggression, depression or agitation etc.
Psychosocial factors
Grandma spends all her life in China. She received a college diploma and was literate [education], she has been an accountant throughout her career [occupation]. Grandma is more of an introvert than extrovert, she used to like do everything by herself [personality]. There might be personality changes due to dementia.
Grandma has been a flowers lover, and one of her hobbies is gardening [hobbies]. When grandma was a kid, she suffered from a national famine. This experience might also shape another aspect of her personality: she is frugal and likes to save up instead of spending. She also experienced the cultural revolution, during which time she and grandpa were verbally and physically punished. The car accident left a strong mark in her memory too [history of psychosocial stress]. Since grandma is of an independent character, she usually does not express her stress, even in her early stage of dementia, she did not speak a word about it. She sometimes cries and becomes strict and grumpy towards others when she is under stress, which I understand and empathise with. The behavioural response to stress could also be changed during the progress of dementia. Grandma was less able to control her emotions and withhold her words as dementia progresses.
The simple intervention
Starting point: hobbies
I wonder if bringing some flowers to grandma 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”. Grandma 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.
In the nursing home, it might be difficult for the care team to keep track of what are the places each resident tend to stay. This is where data-enabled design could help. As discussed in Part II, the data collected by sensors could help designers to gather more types of continuous personal data about one person living with dementia over a long period of time. For example, the Indoor Positioning System is able to keep track of the movement path of the residents; and locations, where each resident tends to stay, can, therefore, be derived.
In addition, the care team normally has developed an impression about the noise, lighting, temperature, crowdedness and decorations at different locations in the ward; hence they can, to some extent, deduce what kind of physical and social environment each resident is in given the location data of the resident.
Back to grandma: 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.
During her stay at the hospital, she cannot meet her flower friends. Bringing real flowers is not allowed in the hospital. So I brought some plastic flowers to grandma’s bedside, I was worried: what would be grandma’s reaction? can she recognize the “flowers” are not real?
“Look at them! how pretty are they!” grandma commented on the “flowers”. Grandma doesn't talk much these days and this is about the first time grandma initiated a conversation in a positive tone (since she is in the hospital, she has been asking: when can I go home? where is this place? what happened?).
“Indeed, did you grow it?”
Grandma nodded and then she touched the “flowers” time and time again.
Considering grandma has to lie in bed for most of the day, I got a “flowers” string (one side attaches the bed and the other side hangs on the IV hook), so the “flowers” are always within grandma’s sight.
Not only grandma but also the nurses like the “flowers”. Indeed, these “flowers” are the only deco with warm colours in the hospital. Moreover, it brings people closer to nature. Red-purple is one of the most pleasant hues for human as demonstrated by the journal article: Effects of color on emotions.
Insights
Grandma is able to indicate what she likes, and it is important to lower the threshold for her to indicate her preferences by translate abstract concepts to concrete experiences. 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”. Yet, presenting flowers of different colours to grandma enables her to be immersed in the experience of observing the flowers, in this way, it is easier for grandma to comment on her preference of the flowers with simple closed-ended questions (e.g. do you like it?).
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 being 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 for grandma, so she gets distracted easily [cognitive factors]. The exploration nature of AquaPaint might be more suitable for people who are in the early and moderate stages of dementia.
Did you know
Nature has been found to have a curative effect on human beings in general [1]. A variety of horticultural therapies has been applied to help people living with dementia with their moods [2].
References
[1] R. S. Ulrich, “Visual landscapes and psychological well‐being,” Landsc. Res., vol. 4, no. 1, pp. 17–23, Mar. 1979.
[2] K. H. et al., “Effectiveness of horticultural therapy: A systematic review of randomized controlled trials,” Complement. Ther. Med., vol. 22, no. 5, pp. 930–943, 2014.
