In this week’s blog, Justin Mazzotta, currently studying on the MSc Advanced Dementia Studies at the University of Bradford, tells us about his experience of working with three men living with dementia who were socially isolating due to the coronavirus pandemic. This is work he is undertaking for his final year dissertation.
In this short written piece, I aim to show the support I provided to people living with dementia during the coronavirus lockdown of 2020. First I would like to share a little about the service setting- a social farm in Yorkshire and give a sense of what that is. I will then explain how people with dementia, their families and I established ongoing contact through lockdown and describe some of the interactions we had. I have also highlighted some of the learnings I made during this time. Finally, I have summarised the main strategies I used to look after myself during lockdown. All names have been anonymised.
Social farming (also known as care farming) can be considered an alternative to traditional indoor services for people with dementia such as day centres. There are around 300 social farms in the UK, with a handful providing regular support to people with dementia. As the name suggests they are often run from farms or community gardens. Here is a link if you are interested in finding out more: https://www.farmgarden.org.uk/gcf/what-is-care-farming.
Our social farm is based on a mixed working farm with animals and a small proportion of agriculture and fruit/vegetables. We lease the farm once a week for the day and have access to the whole site. Our activities includes feeding and interacting with the farm animals (goats, pigs, sheep and cows etc.), mucking out the animals, helping with farm maintenance and D.I.Y, growing and harvesting fruit and vegetables, baking, meetings. Last but not least relaxing and socialising are also key features of our service.
Service users have told us that keeping active and involved sometimes helps them to cope with the symptoms of dementia:
“When I’m doing something like this I’m thinking about this. When I’m out, even walking, my dementia keeps coming back”.(Kenneth)
As mentioned, our activities are varied and my job is to identify what people enjoy and are able to do and most of the time this works well.
“I love it. That’s why I like coming here, it’s easy. When you get there you know what you’re doing.” (Tony)
Prior to lockdown, three service users living with dementia regularly attended our weekly social farm in Yorkshire. It’s fair to say they came for a variety of reasons- for some it is primarily for the work activity, for others it is for the animals, or to socialise or to be outside etc. Service users also come from diverse work and social backgrounds: for instance, some have been farmers, others in the army or taxi drivers, although often with some interest in animals or nature in their lives. Our aims include staying involved in meaningful activity which has a purpose. This is illustrated by the fact that all the work we do needs to be done for the farm to function and is not created for its own sake.
“[We] do what Brenda (farmer) needs us to do. Its good as it keeps us active and we’re not sitting on our arse all day”(Nigel).
Our service user capacity is five people with dementia and currently we have three. I am the service facilitator and the only employee. We also have a few skilled and helpful volunteers two of which are Occupational Therapists.
Covid-19 and lockdown
The social farm had been operating for two years in March 2020. However, on the 17th March we held our last session and suspended the service in line with Government guidance. Throughout lockdown each service user was living in the community: two lived alone in sheltered housing (Nigel and Kenneth) and the third (Tony) lived with his spouse. All were men and aged between 60 and 76. Women are also welcome but the service has tended to appeal more to men. All our service users had other health conditions which put them at high risk to coronavirus.
Establishing ongoing contact
Following the service closure, I exchanged emails with service users’ families to offer ongoing support during lockdown. Two suggested that I telephoned their family member with dementia once a week. We agreed on this and one family member provided additional advice about the best day to contact their relative. The third service user, Tony, had word finding difficulties and telephone calls were not a helpful option for him. Unfortunately, I did not provide support to Tony during this time. I looked into making video recordings and linking these to Skype or Zoom video sessions as a way to communicate with him, but the technical difficulties became a problem. The technicians within the University were not able to resolve this either. Therefor I withdrew direct contact with Tony and exchanged emails with his spouse instead. These exchanges were more or less fortnightly. Not engaging Tony did feel very much like a of personal failure on my part, although I appreciate it was complicated by technical issues.
I carried out telephone calls once a week with two service users (Nigel and Kenneth) between 23 March and beginning August 2020. During the first telephone call with both Nigel and Kenneth, I asked for their consent to stay in touch on the telephone whilst the farm was closed. They both agreed. I then asked them at the beginning of every call thereafter if they had time to speak, paying attention to their responses and throughout conversations for non verbal cues about their consent to participate. For example if they sounded distracted or their tone of voice changed noticeably I would ask if they were ok for time and whether they wanted to continue our conversation.
Both Nigel and Kenneth’s telephones were landlines (neither used mobile phones or owned computers for options such as video calls). Lengths of calls varied between 20 and 75 minutes. Telephone calls to Nigel usually lasted 25-30 minutes; Kenneth’s generally lasted 45-60 minutes. I initiated all calls except on one occasion where Nigel called me himself. After service closure I had sent service users a follow up letter summarising why the farm needed to close. This had my phone number on it and was what Nigel used to contact me. Kenneth also made references to this letter sometimes. Tony’s spouse Sheila would send photos of Tony engaged in activity at home with his care worker. She sent images of Tony baking and singing and I responded to these. Sometimes I would initiate email enquiry of Tony and Sheila would usually respond.
Telephone calls with Nigel
Conversations with Nigel often started by discussing his current daily routines and then moved into reminiscence and reflection on aspects of his life. Nigel often spoke about the lockdown and how strange it was to be living like this. He sometimes spoke about the other tenants in the sheltered housing and how he felt he had nothing in common with them, mainly because of their age discrepancy- Nigel is 70, many other tenants are in their 80’s and 90’s. He preferred to keep himself to himself, leaving his flat to go outside to smoke cigarettes. Nigel told me he also went to the shops routinely to buy himself food and other provisions during lockdown (see shared decision making under ‘what didn’t do so well’ section).
During phone conversations we spoke about different subjects related to Nigel’s life. Although his working life in the Merchant Navy and the places he has visited during three world cruises and others were often returned to. Work seemed a theme to his life he enjoyed talking about and was pleased to reflect on. He spoke of what made the places he’d visited unique: for example, one time he told me about the range of dangerous animals which live on the south pole.
Nigel often required prompting to initiate conversations, but sometimes he initiated a new subject himself. For example, about his time working in the colliery with his father as a first aider. He was quite often animated and engaged during conversations, although his tone of voice and quantity of speech suggested some subjects interested him more than others.
Telephone calls with Kenneth
Kenneth’s telephone calls lasted longer than Nigel’s and there was often a different emphasis. For instance, Kenneth would frequently talk about his dementia and things he has been experiencing relating to that. For example, he would return quite often to an incident he experienced when he went for a walk recently and took a wrong turning, which in turn got him lost. He ended up walking for miles and eventually met a kind lady at a bus stop who accompanied him home in a taxi. Nigel would often have word finding difficulties and then laugh about this or begin to express how this was dementia affecting his life.
I was sometimes able to help him find words when he got stuck, after allowing him time to find the word himself.
Kenneth spoke a lot about going for walks during lockdown and how he had to do that to stay sane: He said his family and professional carers were all telling him to stay at home during lockdown, but he chose to go out anyway. He couldn’t face a life indoors. He expressed he would rather die and live the way he chooses. Nigel expressed awareness of lockdown and social distancing and often said it was stupid. His daily routine involved going to the shops, sometime alone, sometimes with carers. He also had a routine of walking to a local pond to feed the geese and other birds. He really enjoyed this activity and I got a strong sense it gave his day purpose and stimulation.
Kenneth led our conversations a great deal, and talked a lot as was his tendency at the social farm. He was sometimes repetitive and occasionally I would change the subject as I felt I needed to, so that I could stay interested and engaged in our conversation as well. I would ask him about things in his life I was aware of and Kenneth would kindly respond to this strategy and talk about the subject I had initiated.
What went well
Life history knowledge: Prior knowledge about each service user was a big help. On many occasions I was able to interpret what they were talking about when they had difficulty expressing it. Sometimes it was a word which was needed; at other times I had to work hard to understand what subject they were talking about. Prior knowledge of their lives was invaluable at these times. I utilised existing life story documents from the farm to stimulate or expand a conversation. As I already knew both service users well, I found I only needed to draw on these documents occasionally. Nevertheless, sometimes they helped me to provide the name of a family member which had been forgotten or give me details of things I hadn’t remembered. In general, knowledge of the person enabled the conversation to flow much better between us.
Cognitive Stimulation Therapy: During the lockdown I invested in the Cognitive Stimulation Therapy manual aimed at family carers and people with dementia (Making a Difference 3). This was a useful tool to help expand topics and add diversity. Sometimes the conversation prompts were helpful. At other times, simply flicking through it whilst talking stimulated new directions in the conversation. For example, there are some art appreciation activities in the manual and this stimulated a conversation about Kenneth’s own artworks and things he used to draw, some of which he was proud of.
Internet: The use of the internet on my laptop during telephone conversations also was helpful sometimes. For instance, I was able to look up ‘colliery control panels’ after Nigel had explained that operating these was what he enjoyed most about working at the colliery. The image of the panel on the internet enabled me to comment and ask more about it, which was a stimulating subject for Nigel. For example, the panel was very big and this became the focus of the conversation for a while after I had commented on it. At other times, I was able to look up maps of the areas we were talking about and help to build a mental image of the area. This in turn enabled Nigel to remember things about his past such as how he travelled to places.
Research papers: Utilising recommendations from research papers I had read during my studies was helpful too. For example, Fetherstonhaugh et al. (2013) recommended asking the person with dementia if they were comfortable before engaging in conversations. I got into the habit of doing that and sometimes it was clearly helpful to them to be asked as they would adjust themselves. On one occasion Kenneth appeared to move his phone so that he could sit down after being asked. Although I could not see what they had done, I frequently got the sense that this time was helpful to them. During the first couple of conversations I didn’t do this, and one time Kenneth expressed pain in his shoulder after talking for some time, I presume from being in an uncomfortable posture for a prolonged period. Other strategies I used were orientating to the farm context of our relationship during conversations and ending the call by orientating them back to their day and what they were doing next.
Sharing aspects of myself: Sometimes sharing aspects of my life helped me to feel a partner in the conversation. On occasion they would ask me about my life, or I would offer a piece of common ground between us when they were talking about something to do with their lives. An example of this was when Nigel was talking about Australia being his favourite place to visit, I mentioned that I had lived there in my youth and it felt good to have that common ground or shared experience to talk about.
What didn’t go so well
My stress levels: Sometimes I was tired, stressed and lacked motivation due to my own circumstances during lockdown. For example, on one occasion I was ill and needed to quarantine for a fortnight and I was also doing a lot more parenting with my children which was stressful. I would telephone Nigel and Kenneth during these times and make an effort, but I was aware that my mood impacted on the conversations. For example, I found it harder to be enthusiastic about some of the things they said.
Shared decision making: Nigel was going out to the shops during lockdown even though he was in a high risk category from Covid-19. This was an issue I feel I should have discussed more with him, to see how much he was aware of the risks when making his choice to go out. Reflective periods after conversations would have been helpful to me to become clearer on this. He was living in sheltered housing so I assume some responsibility would have been with the manager there, but it would have been helpful to discuss it to make sure it was covered.
How I looked after myself during lockdown
As previously mentioned, I was sometimes stressed and experienced low moods during lockdown. I enrolled on a three month embodiment course and found this helped me to stabilise my mood and stress levels. The course helped me to cultivate a morning meditation and movement practice, building on things I had already done before, although not on a daily basis. Each morning I would begin my day with a thirty minute breathing meditation, sitting on the edge of my bed and practicing abdominal breathing. Then I would engage in a movement practice such as mindfulness exercises or movement to music (before the children woke up!). Another course objective was to introduce the practice of noticing my body and its feelings frequently, followed by a centring practice. This was really useful as it helped me to notice how stressed I was at the time and then to centre myself, which calmed me down noticeably and made managing my days easier overall.
The aim is to keep telephone contact going with Nigel and Kenneth until the social farm service reopens hopefully at the beginning of September 2020. As the service is largely run from an outdoor setting it is considered safer with respect to the transmission of Covid-19. There will likely be other necessary adaptations to the service, such as physical distancing, and I will be interested to hear the views of our service users about the experience of coming to the farm with these imposed adaptations.
Written by Justin Mazzotta MSc Dementia Studies Year 3
To get in touch about the article or anything related email Justin at: firstname.lastname@example.org or call: 07932 420726