Nigel's story

Nigel Hullah, co-chair of the 3NDWG and a person living with young onset dementia, shares how the COVID-19 lockdown has affected people who have a diagnosis and how things must improve in the future.

When lockdown started, the 3 Nations Dementia Working Group (3NDWG) wanted to increase contact with people affected by dementia.  They set up a series of webinars on a range of subjects.  80-90 people have attended each webinar. 

Most people affected by dementia have stuck well to lockdown guidelines.  Many have secondary health conditions, so people felt very vulnerable.  They have a fear of loss of skills and a lack of regular social engagement.  They are not happy for things to go back to how they were, things must improve.  People may need extra help and support to regain their confidence and to access services. It is vital these services continue.  Many people are very anxious about re-entering normality and have lost adaptive skills. Repair work and re-enablement is needed. 

Carers have expressed concern about lack of space / the ability to recuperate and the frustrations felt by people with dementia are being taken out on family members.  But it is important to acknowledge that there are opportunities.  People trust the Third Sector more than statutory services.  Many face to face services were withdrawn too quickly and people with dementia are not classed as a vulnerable group.  Not everyone has a caring support network.  There has been an increase in pressure on carers, they are angry at services being stopped.  There is a need to take note of the lessons or the new normal will be worse. 

Conferences and large events may not come back.  People have got used to new ways of working but do not want the same as before, they want better than before.  People with dementia are not as fragile as people may think.  They need support and help but are resilient. I am in awe of the depth of character of people with dementia.  This is an opportunity for statutory services to build.  

There has been an increase in the use of social media which has been positive and there is a new culture of using Zoom.  It is convenient and helps us hear the voices of people with dementia. He fears that people who are on the cusp of getting a diagnosis will suffer as services are not there.  Help may need to be different / individualised as everyone’s experience will have been different.  For the 3NDWG, webinars and Saturday and Sunday socials will continue.  They give people the opportunity to vent and have a voice.  

But the future will be difficult, the cost of COVID-19 will fall to the general public.  There will be increased pressure to deliver services with less money, but there is a willingness to adapt. 

- Nigel Hullah is chair of the 3NDWG, a regular contributor to the Dementia Diaries and is active on Twitter @nigel8812922  

- July 2020

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