There are certain groups in society for whom the current strategy for dealing with coronavirus does not appear to cater very effectively. One of these groups is people with dementia who live alone. What needs to happen in order to keep people in this situation safe and well?
The current requirement for everyone to self-isolate in response to the coronavirus outbreak is already having a disproportionate impact on people living with dementia and their families. In addition to this, however, we will soon be faced, according to Health Secretary Matt Hancock, with a new requirement for all people over 70 to remain entirely in their own homes for an as yet unspecified but ‘very long’ period of time. This is regardless of their physical health or any underlying conditions. The implications of this are serious for anyone over 70, and more so for those with dementia. Already there is beginning to be a lot of guidance online about how to cope if you are living with someone with dementia in the community (see for example https://www.alz.org/help-support/caregiving/coronavirus-(covid-19)-tips-for-dementia-care). In today’s post we turn, however, to the case of people with dementia who are living alone. The statistics here are alarming; around a third of all people with dementia in the UK are believed to live alone in the community.
Of course not everyone with dementia is over 70, and nor should we jump to the conclusion that everyone who lives alone and has dementia is the same. There is a great deal of diversity among people in this situation and many will manage well independently. Some will be recently diagnosed and have only mild cognitive problems. Others will not have been diagnosed at all, and may not yet be known to services. Many will have more severe cognitive difficulties, possibly in conjunction with additional health problems. Each of these groups will face different problems arising from both the current guidance in place on self-isolation, and the more stringent requirements that may soon be introduced. For example:
- Current guidelines on self-isolation stipulate that only essential contact with family and friends is allowed. But how is ‘essential’ defined in the context of a family member with dementia s who does not live in the same household as his or her relatives?
- Some people living alone with dementia may not be following the news, or may not remember what they have been asked to do, or why. If people in this situation continue to go out, we have to assume – in line with recent powers given by the Government – that they run the risk of being fined, or, ultimately, arrested and forcibly isolated. This raises significant human rights concerns.
- Even more seriously, others who do follow the guidance on remaining at home but are either not known to services or unable to contact support agencies, may be stranded in their own homes without food or medical supplies.
In each of these cases there is currently a lack of the dementia-specific clarification which is needed both in order to keep people living with dementia safe and well, and also to make the coronavirus strategy work. Within our own communities we can all do our bit to help, by looking out for neighbours who may be affected and offering help, support or just a chat. In many areas there are now also WhatsApp groups and other online help available on a local basis. Many voluntary sector organisations are in the process of producing advice and have helplines (such as the Alzheimer’s Society helpline 0333 150 3456). However, we also need to speak out and act now to make sure that the case of people with dementia is recognised and taken seriously by the Government over the coming months. This is particularly important for people who are living alone and may not have other advocates or support lines available to them, to ensure that they are not left struggling in confusion, isolation and fear.
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Written by Dr Andrea Capstick
Andrea says: I work with the Centre for Applied Dementia Studies as a Senior Lecturer on the MSc Advanced Dementia Studies programme. I am currently working at home with my partner, a NHS researcher, and our two children Irena (Ira) aged 5 and Asher, 8 months. So far we are enjoying the good weather and we are managing to get out every day for exercise, but it’s a real challenge to balance work and childcare, let alone ensure that Ira gets anything resembling an education at the same time. 
We have found some good online leaning resources for her. She’s currently on Level 12 of a computer game about gravity, for example. We’re also building in daily treats and trying to avoid too much TV. This afternoon we’re planning to go tracking in the woods nearby and make banana splits.
We are now recruiting for the MSc Advanced Dementia Studies starting in September 2020