We are living in strange times. I feel as if my life is suddenly discombobulated, my normal rituals and patterns of living are no more. Life is stripped back to a simpler time when the procurement and cooking of food takes on a greater meaning, there is time to chat or write to friends and catch up on so many projects that have for years been cast aside. I feel blessed that I am resilient and resourceful and cannot imagine how it must feel if I was affected by dementia when at the best of times the world is such a confusing place and struggling to make sense of it is difficult. Or if I was in the position of having to care for someone with dementia when the news continues to highlight the added risks for older people with underlying conditions of developing Covid-19 and the knock-on impact this has of increased care duties. This must create a huge sense of fear, anxiety and responsibility.
I was talking to a carer the other week whose friend lives on his own, he is used to going out and about visiting the shops when he pleases. Social distancing and isolation create new anxieties for her; she wants to protect him by not allowing him to go out. The likely outcome will be that he will not understand and continue to try to leave the house. This could lead to a spiral of confusion and distress for him and be extremely upsetting for all concerned.
For many older family carers at home with an individual affected by dementia the usual routines of going to day care, cafes, church, activity groups or having a befriender have disappeared leaving a void in any form of respite or social intervention. How must this feel?
For those receiving a package of home care familiar faces may no longer be there, and the usual forms of dress will have been replaced with confusing protective clothing and this may lead to the person affected by dementia to be suspicious or hostile and reject the support offered.
In the next few weeks the predicted increase in the number of cases and deaths caused by Covid-19 will be a very worrying time for families and friends of frail people with advanced dementia. Already there are no visitors to care homes and we hear on the news of heart- breaking reports from carers who are unable to see their loved ones. Grief has been described by Dr Kenneth Doka as the ‘constant companion of dementia’ and the additional risk for the individual will only add to the intense emotions associated with loss and grief. There will be fear of losing the person, fear of them being admitted to hospital and dying alone. We know hospitals and the alien environment they create together with unfamiliar staff may have a detrimental effect on the person with dementia. One can only imagine how difficult it will be when staff are under increased pressure and have no knowledge of the person’s background or likes and dislikes.
This time will pass, but there is sadly no denying many people will die – but I have a dream that their legacy will be that social care staff will be no longer be seen as low skilled and low paid workers but as equal partners working alongside NHS and that both arms of our health and social care service will be fully funded and supported.
Jenny Henderson RGN Dip N, April 2020
Some useful contacts
Alzheimer Scotland Corona virus updates https://www.alzscot.org/coronavirus-updates
If an older person you know does not have symptoms, but you or they are looking for general advice on Coronavirus, the dedicated NHS Scotland information line is
0800 028 2816.