Keith's story

Keith Oliver was diagnosed with young onset dementia 10 years ago at the age of 55. He is a member of the Young Dementia Network, an ambassador for the Alzheimer's Society, Kent & Medway PT NHS Dementia Service User Envoy and is a steering group member of 3 Nations Dementia Working Group. 

Keith shares his thoughts about the impact of the COVID-19 pandemic on younger people living with dementia and the future. 

What are the issues younger people and families are currently facing?

People have frustrations around being cooped up / shut in / locked up.  The frailty of older people with dementia doesn’t apply to younger people for whom the idea of being shut indoors is a bad thing. There is a sense of detachment from family, friends and people in general and fear and confusion around the present and the future.

The risk of contracting the virus / passing it on to family members is a big fear.  There is also fear around losing the ability to maintain contact with people and to express yourself in the way that you want.  Zoom doesn’t do it effectively, it is a good substitute, but not a replacement.

Younger people are trying to be tech savvy but it is now becoming counter-productive and is starting to have a negative impact.  It has affected concentration, sleep and mood, causing people to have to manage it more effectively.  People are losing enthusiasm and the ability to do what you need to do.  Skills are being lost.  

There are lots of issues around feeling marginalised, within an already marginalised group.  Younger people are disregarded, people don’t know they’re there, even the over 70s with dementia in care homes are viewed differently.  Younger people are the invisible casualties of COVID.  The impacts are also felt by family, friends and anyone who shares a household with a person with dementia.

Going out is a worry.  Going out alone is now much more of a challenge. Being able to use volunteers to accompany a person on walks or to the shops is a positive way to increase confidence levels, conversation and connections. The current situation is accelerating many younger people’s dementia.

I have hope for the future. There are others out there who can help but if people don’t ask for help, they won’t get it.  People need to swallow their pride and realise that you can’t do it alone and need to ask for support. Care plans should play a part. My care plan has been ruined by lockdown because it is a social model.  I know that my work as an ambassador, envoy etc and interaction with others has helped me.

Groups that are hard to reach and even harder to reach now, which is very sad and worrying.

How have the services and groups you are part of adapted recently?

Technology has been a life-saver.  The telephone is hard for me to use but shouldn’t be overlooked.  The NHS is using Lifesize (video conferencing software) and many are using Zoom.  Some are using Teams which I find much harder to use.  My consultant has phoned me every three months, so he has adapted his service. 

Email correspondence can be good but is hard to manage.  I don’t do any social emails; they are all dementia-related.  I like to use text or Messenger as messages are fairly short and I can see it has been read. It clusters traffic together which I find useful so I look back and remember past conversations.

My Forget Me Nots group has met via Zoom for the last three months, calls have lasted 1 hour 15 mins and attendance has been good, with light-hearted conversation.

Face to face meetings are energising and I enjoy the travel to them if they are at a venue I know and can get there easily.  I enjoy travelling with others, briefing them about the meeting and chatting about the day in general afterwards. I find it incredibly positive and miss it.

How do you think things will change in the future?

Things are not likely to go back to how they were due to a combination of COVID and finances, but I hope there will be a mixture of face to face and Zoom.  Alternating face to face meetings with Zoom ones would be a sensible way forward.

I feel that meeting face to face is so important in order to build relationships, trust, understanding, affection and support.  This doesn’t happen when meeting remotely.  Our work is enhanced and enriched because of our relationships and some things just can’t be done via screens for people with dementia.  Actual visuals are very important.

I feel there needs to be an exit strategy; I don’t want this to go on and on.

- Keith Oliver is the author of Dear Alzheimer's - A Diary of Living with Dementia

- July 2020

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