The legacy of COVID-19 for people living with dementia and their families

Author: Ian Sherriff BEM, academic partnership lead for dementia at the University of Plymouth Medical School Faculty of Health

During the past twelve months, it is evident that the legacy of COVID-19 has had a major impact on the lives of people living with dementia and their families. During the COVID-19 lockdown period, they faced living without respite care, not being able to attend activity groups, and meeting other members of their community and members of their own families. This increased their feelings of loneliness and isolation. Research by the Alzheimer’s Society during the COVID-19 lockdown suggests:

A third of people living with dementia live independently in their community. It also found that 82% of those respondents reported deterioration in their symptoms. Of that 82%, around half reported increased memory loss and difficulty concentrating, whilst one in four (27%) said reading and writing had become more difficult, and one in three said they had difficulty speaking and understanding speech. More than a quarter (28%) had seen a loss in the ability to do daily tasks, such as cooking and dressing. Finally, family carers are displaying anxiety, aloneness and isolation caused by the legacy of COVID-19.

These research findings identified the disastrous effects COVID-19 has had on people living with dementia, such as a further reduction in memory, change in routine which has caused high stress, panic around the use of face masks due to not being able to see people’s faces, reduction in confidence, further mental and physical deterioration, and a significant increase in stress for family carers.

These legacy challenges must not be ignored. They can only be tackled through new approaches that draw on all parts of our rural communities. The Rural Dementia Guide sets out some simple and achievable aims in response to these challenges.

Research shows that where local councils, rural communities and community organisations proactively engage in providing support and understanding to alleviate isolation, loneliness, stigma, and despair experienced by people living with dementia. “It impacts positively on the individual with dementia and their family carers health and wellbeing”.

Whilst the legacy of COVID-19 has further exacerbated these issues, the use of sustainable community support and understanding by parish and town councils, communities, community leaders and the public living in rural communities to think and act differently in supporting individuals living with dementia and their families. The outcomes of this approach are summed up by the words of Tom Kitwood: "If personhood is to be maintained, it is essential that each individual be appreciated in his or her uniqueness. Where there is empathy without personal knowledge, care can be aimless and unfocused. Where there is special knowledge without empathy, care can be detached and cold.  But when empathy and personal knowledge are brought together, miracles can occur”