The pain of isolation – thoughts for Dementia Awareness Week

This has been Dementia Awareness Week and it has been another unusual week in lockdown. Normally every year I would have been attending events, conferences or meetings learning and exploring with others about the nature of Alzheimer’s Disease. For countless thousands it is also a week when we remember those in our own families who have died from dementia.  It is a time when I picture and recall my own grand-mother and mother’s journeys into the lostness of dementia.

This year, however, faced with Covid19 I have spent days thinking and working on practical steps so that we might be able to restore visiting into our care homes to re-establish connection and belonging. But as I have done so I have grown even more acutely aware and concerned about the impact that lockdown is having upon the psychological and physiological health of care home residents as well as people in the community who are living with dementia.

Like many others over the last few weeks I have been moved to a real depth of awakened understanding by the reporting of Lewis Goodall on BBC Newsnight. On Thursday night his input was on the effect of Covid19 on people living with dementia. He reflected on the disproportionate impact of isolation on people with dementia and informed his viewers that  in England 42% of Covid deaths in care homes were from those living with dementia. I suspect in Scotland the figure is significantly higher given that 90% plus of people in Scottish care homes have dementia. He also suggested that many were not dying from Covid19 but from the effects of isolation.

At the start of the pandemic as care homes went into lockdown the advice from Government and public health experts was that individual residents should be confined to their own rooms and that communal areas and activities should be ended or reduced. Normal activities such as socialising and eating together should be halted and that social distancing should be introduced. That is now 12 weeks ago.

So, for 12 long and painful weeks thousands of individuals who are not aware of what is happening and who do not understand why family faces have disappeared have had their lives turned upside down. Critical routines which give a pattern of familiarity and comfort have been upended. Activities to stimulate and keep both physical and mental capacity going have been reduced or have simply disappeared as staff have struggled to deal with real desperate clinical care needs of others. Perhaps most importantly the affirmation of touch and stroke, of smile and hugs, have not been offered or have been hidden behind a scary PPE mask. Staff have struggled with those whose dementia meant they would not remain in their rooms, for whom masks, and shields have been simply terrifying, whose behaviour has become challenging in all the confusion.

I simply cannot conceive what life must feel like to someone with dementia in a care home today. It must surely be terrifying. I cannot imagine how disempowered and frustrated care staff are feeling right now. A nurse on the frontline this week described it to me as “seeing people silently screaming inside and not being able to do what you want to do – to touch and to soothe.”

I know the why, the importance of preventing infection spread and the imperative of protection, but how long can we continue to isolate individuals in the way that we are now doing? This enforced confinement is destroying and damaging just as many lives as the virus is. People are losing their physical body mass; they are losing the physical and mental abilities which they once had, and they are at real risk of deep depression. We urgently need to now find a better balance between infection control and the enabling of life. We need to think about how we can use volunteers and supplementary staffing to allow people the freedom of protected space and place. We have rightly stressed the importance of scrutiny and inspection on infection control practice, but have we given as much attention to the quality of life that is now that of those with dementia in our care homes? For too many there is existence and safety, but life and purpose is disappearing.

Kate Lee, CEO of the Alzheimer Society in the Newsnight programme said that “if this was our children being affected we would be screaming from the rooftops.” Sadly, as she also stated this is further evidence of the way we treat people differentially because of their age or because they have dementia and not some other condition such as cancer.

On this Dementia Awareness Week it is the urgent imperative on all of us involved in the care of citizens to search out new ways so that we can open the doors of confinement, so that we can begin to restore relationship and interaction; start to again give meaning and purpose, fulfilment and enjoyment to those living with dementia.

We have to find better ways to protect than we currently have in practice. There is little purpose in having infection free environments if the process of achieving them is the effective loss of life and meaning. This is the challenge for us all. If we do not then we have lost our own sense of direction as a society. Lockdown in our care homes is  harming too many.

Donald Macaskill 

Last Updated on 10th June 2020 by Shanice