Thursday Evenings. 8pm. It starts as a murmuring clap. The silence is broken and as doors open and pots are banged, a neighbourhood in stasis, in paralysis, comes to life. Children run around the gardens banging palm against palm. In some villages bagpipers take to the streets and sound the alarm. A cacophony of noise reached many parts of the country for the first part of lockdown, as millions of people showed their gratitude to the NHS staff, the carers, and other keyworkers who were contributing so necessarily in efforts to stem the virus and keep people safe.
For some people, including people living with dementia, it was also the one public occasion in a week of total isolation.
Imagine a late middle-aged couple. A Husband and a Wife. She was diagnosed with Vascular Dementia 18 months ago. The husband, who is her designated carer, has his own serious health issues. He believes that his wife has deteriorated markedly since locked down. She has acknowledged this and has admitted that she is beginning to forget words during their conversations, becoming frustrated until her Husband helps her to identify what she is trying to relay to him (He calls this a game of ‘charades’ – a guessing game of words).
The Wife has also felt sad as they were due to embark on a cruise in March, which was unfortunately cancelled. The holiday was especially important to them as it was probably the last holiday abroad they would take due to her deterioration. This sadness has been compounded by their inability to hold their milestone wedding anniversary party, which they had been planning for the last 12 months. Cancellation had been particularly hard for her as she takes great delight in her personal appearance – one of her great joys is dressing for special events. Whilst sad to see, her Husband believed that each incident was manageable. However, when viewed together, and in such a small space of time, he felt that they have had a noticeable effect on her mood.
Imagine another couple. A Husband and A Wife. They are elderly. The Husband diagnosed with Alzheimer’s three and a half years ago. His wife is his designated carer. She too has identified that her Husband had become more confused/agitated since lockdown. Through discussions with his Wife, he has acknowledged this. They are not the only couples either. Many people living with dementia are finding their wellbeing deteriorated.
This couple considered themselves fortunate that they could rely on their daughter’s support during lockdown (daily visits, delivering groceries, preparing/delivering home cooked meals, etc). Being technically competent, the Wife has been able to use FaceTime to make contact with other family members who live further afield. They expressed concern that others, particularly those living alone, were less fortunate.
They also expressed disappointment at the lack of NHS appreciation (Thursday applause) within their local neighbourhood. These occasions are important to them. The solidarity and sense of community they proved offer connection. They are performative, like the placing of rainbows on windows, and like the VE day celebrations. It’s the theatre of the everyday, and it enriches even on the smallest of scales, the experience of people with dementia living in lockdown.
This couple found the celebration of VE Day in particular to be reassuring and uplifting. The Wife had been pleasantly surprised by her Husband’s enjoyment of TV on VE Day programmes. She commented upon his concentration span, and enjoyment, whilst watching the old films, listening to WW2 era songs and people sharing memories/stories of VE Day.
Imagine another man living with dementia. He tells his daughter about the lady that walked past his house on VE Day. She was dressed up for the occasion. She paused at his window and saw him. She smiled at him. She waved. “It was the Queen!” he told his daughter eagerly, “she waved, at me”.
Written by OCN volunteers and participants.
This is the fifth in a series of blog posts reflecting on the experiences of people living with dementia, their carers and neighbourhoods during the coronavirus pandemic. The posts are a synthesis of perspectives gathered with people living with dementia in Central Scotland over the course of the Covid-19 outbreak in 2020. These have been collected by OCN volunteers and drafted collaboratively in order to build a larger picture of the impact of Covid-19 and what the changes around it have meant for people living with dementia and their carers. It is important to highlight that in most instances these are people who will have been shielding for a significant period of time. It is clear, therefore, that more must be done to improve their access to support, community and to reduce loneliness. We hope these articles will widen understanding of the issues and draw attention to what can be a hidden problem for many people.