LIFE in lockdown is challenging for all of us - but what if you have dementia and are living alone in self isolation?

That is the reality for Michael Anderson, who is living with dementia and has cancer of the bladder. Michael is a member of a support group run by Pathways - which supports people with working age and young onset dementia and their families - and he’s an ‘Expert by Experience’ for the Bradford-based organisation.

Michael, 60, has been involved in Pathways research projects such as Journeying through Dementia, which he gave a presentation on at Dementia Congress last year, and he’s involved in the NIDUS study, looking at how to support people with dementia to live independently at home. He also works with the University of Bradford’s School of Dementia Studies.

Here Michael explains what daily life is like, in self isolation:

“I am living with Posterior Cortical Atrophy (PCA) dementia. I was diagnosed in June 2017, after 16 months of tests. I live on my own. I was a long distance lorry driver for over 30 years, my partner lived with me but because I was away all week, only home one day, she had enough and went. I got used to living on my own; I could watch what I wanted on TV, go out when I wanted, for a drink and a catch-up with mates. But then I lost my driving licence because of problems I was having, and I was diagnosed with dementia.

Living on my own with dementia, I realised I could only carry on with support and help from the memory team and I found the best way for me was to have routines. This may be going out to meet people for a chat, going to meetings and dementia groups, and getting involved in dementia research. This gave me a better understanding of dementia.

Then in September 2018 I was diagnosed with a cancerous tumour in the bladder and had surgery to have it removed. In November 2018, I had a camera inspection which showed that the tumour had returned, I was told it was cancerous and more aggressive than the last and I would have to have it removed by surgery. Six weeks after surgery, in January 2019, I started cancer treatments.

Then this year, we are all thrown into chaos by coronavirus. I decided before lockdown to start getting some food in, but I found that I was struggling in the shops. They were in chaos - people showing total greed and just buying anything and everything on the shelves, and I found that I just couldn’t cope in the shops. It was starting to have an impact on my dementia, I was having to just go home. I’ve found that I can’t cope with a lot of people, it becomes confusing, so the best way for me to cope is to go home where I feel safe.

On Monday March 23 I received a text message from the NHS saying I am high risk category, and to stay indoors for 12 weeks! The problem I had understanding this was the Government had said anyone high risk would receive a letter, but I hadn’t received a letter so I believed that some people would have to self-isolate for three weeks and some for 12 weeks, but we could still go out for essentials, medication and exercise. I thought instead of the three weeks, I would have to do this for 12 weeks.

But I was told by my occupational therapist from the memory team that I can’t leave my home for anything and must stay indoors for 12 weeks, and they were getting in touch with social services to arrange someone to do any shopping I needed. Everything was going to be done over the ‘phone as she is now working from home, and all my other meeting and appointments were cancelled.

Someone doing my shopping was going to be a problem for me. I was having problems with counting money, so I pay by card, and I don’t trust anyone with my card. Also I can never remember what’s in my bank account. I always checked it at the cash machine when I went into town. When you’re on benefits you have to work on a budget. I started to panic because my routine had been thrown straight out the window and I started to think ‘Will I be able to cope living on my own?’

Then on Saturday March 28 two letters arrived from the NHS. One said the NHS has identified me as high risk and to stay in my home for 12 weeks and that I can’t can’t have face-to-face contact with anyone. It has a number to ‘phone if I need food or medication. The other letter was to tell me they have cancelled my next cancer treatments, as they have an impact on my immune system.

I believe that this is going to have an impact on me. Let’s say I find routines for staying in the house, and after 12 weeks when I can go out am I going to want to, because I won’t want to break the routine I’ve become used to? Then there is when the fog descends, where I start to get confused easily. I’ve noticed I am getting this more and more this past week.”

* Pathways is a support group for people diagnosed with young onset dementia (usually under 65). It runs a monthly support group meeting which was face-to-face but is now online. Pathways also runs social activities and an annual holiday, which this year was due to be in Llandudno in June. The organisation worked closely with Emmerdale on its long-running Ashley Thomas dementia storyline.

Clare Mason, who runs Pathways, said: “This period of social isolation has been a huge challenge for our members, not only the things Michael mentioned but the support from meeting people in a similar situation, and experienced volunteers. People have had to learn to use new technology and not all our members are online so we’re ringing them to keep in touch and ensure they’re not further isolated. Our volunteers have been amazing. Our Zoom support group meetings are often emotional as some members haven’t spoken to anyone all day.

“For some, it’s been hard to fully understand the coronavirus situation and why they can’t go out or why their day service has closed. For those who live alone, getting out of the house is a coping strategy for living with the complexities of dementia.We’ve had reports of people sleeping a lot more as there are no routines, people not sure what day it is, or season, and this has affected energy levels and the ability to communicate.We’re holding Zoom meetings every two or three days and phoning people as regularly as we can. People are trying to stay positive; we’ve set up a WhatsApp group, it’s full of jokes, funny videos, ideas for films, things to do and recipes. The friendship that people in the group hold so dear has been taken to another level.”

l For more about Pathways call 07917 751478 or email pathwaysdementia@gmail.com