Coronavirus literally stopped life as we knew it in its tracks. Many of us stopped working, we remained at home and we changed how we shop, spend time and connect with one another. It’s been challenging for almost everyone in a multitude of ways, but as might have been predicted, the coronavirus pandemic has brought with it a whole series of additional challenges for those living with dementia and for those caring for them.
On first entering the period of lockdown, several of our OCN participants experienced considerable difficulty in adjusting to the new situation, in particular the enforced changes to their routine. Problems ranged from lack of understanding as to why self-isolation was required and why regular attendance at events such as Town Break or their local Dementia Café had had to be abandoned. Routine, for many families managing to support a loved one living with dementia, provides a structure, safety and reassurance in a world that is often uncertain. Lockdown pulled that routine out from under everyone’s feet and immediately new routines needed to be created in small spaces. Gone was respite, the short break offered by a regular activity and the purposeful and enjoyable social events that people living with dementia so value in continuing to live life well.
During the initial period of lockdown there was a feeling amongst some of those caring for loved ones that they were no longer able to rely to the same extent on the support services on which they had come to depend. There was thus a tangible sense of relief when support mechanisms using digital or video technologies were put in place. Volunteers have participated in several of these virtual meetings, and found it gratifying to witness people’s visible delight when they are able to see and hear old friends again.
While the new technologies have played their role in enabling people to keep in touch, volunteers have found that they have been making increasing use of the phone to keep in contact with participants and their carers. Some of the participants obviously feel more comfortable using the phone and some have even suggested that they feel much less apprehensive than they do when exposing themselves to the uncertain delights of Zoom.
Whilst shielding, having the opportunity to speak to someone one step removed from the home, and not only a service provider, has been a really important aspect of what Our Connected Neighbourhood volunteers have been able to offer people living with dementia and to a larger extent their carers at a time of great disruption and difficulty. It has been especially important during this period of lockdown that – even in a limited way – friends, neighbours and volunteers been able to provide continuing support to carers. All of us recognise that enforced isolation has made the task of caring for a loved one that more difficult. Carers with whom we have spoken talk about a heightened sense of uncertainty and apprehension on the part of those living with dementia. Sleep patterns have become increasingly disturbed; behaviour has become unpredictable and mood swings more frequent.
On a positive note, there has been greater recognition amongst families and the wider community of the special challenges being faced by people living with dementia at this time. There is some evidence to suggest that there has been a greater readiness in some families to provide additional support. Likewise, there are some signs that members of the wider community are constructively intervening after it has become clear that someone living with dementia or their carer is in urgent need of support. In fact, in some cases Covid-19 has supported greater freedom. One woman who was deeply reluctant about giving up her car as she began to get used to living with dementia, found coronavirus liberating as she finally embraced her mobility scooter and now runs rings around the village she lives in evading her family at every turn!
Written by OCN volunteers and participants.
This is the first 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.