Remembering Dementia Action Week

Dr Emma Vardy is a Consultant Geriatrician and Clinical Dementia and Delirium Lead at Salford Royal NHS Foundation Trust. She is Chair of the BGS Dementia and Related Disorders Special Interest Group.

Dementia Action Week, organised by the Alzheimer’s Society, was due to fall between 11 and 17 May 2020. Although Dementia Action Week has now been deferred to later in the year, it still seems a good opportunity to raise the profile of dementia, highlight the unmet needs created and magnified by the COVID-19 pandemic, and celebrate the small successes made in maintaining and improving standards in dementia care.

The COVID-19 pandemic has unfortunately seen many staff involved in memory services and dementia care redeployed at a time when many organisations caring for people living with dementia have been challenged and stretched beyond capacity. Though dementia has seemingly been overlooked at times in these and other areas, this has triggered action from existing and new dementia champions. Perhaps this has been best illustrated by John’s Campaign, who were quick to recognise the impact of revised NHS England guidance on hospital visiting, and who successfully campaigned for revision of that guidance to recognise the role of carers for people with dementia. Similarly, an outcry from the dementia community prompted experts to contribute to the updated NICE COVID-19 rapid guideline for critical care in adults.

Care homes have been particularly hard hit by the pandemic, and this means that, given the prevalence of dementia amongst care home residents, many people living with dementia have been significantly affected. The challenges faced have been well documented by the press and colleagues alike. However, in the midst of this has been the development of some wonderful resources, illustrating the compassion of many of the staff who care for people with dementia. Those worth a particular mention include a lovely film produced by the Newcastle dementia service for care home staff with some real-world examples and a resource produced by the Greater Manchester team, Dementia United, the latest link to which can be found here on the British Geriatrics Society website.

We should not forget the people living with dementia at home and those caring for them. Again, organisations that supported carers prior to the pandemic have risen to the challenge. An example is the COVID-19 information hub created by TIDE carers, for carers of people living with dementia, which can be found at their website. Additionally, the IDEAL programme at the University of Exeter has produced a leaflet on how to stay well during the coronavirus outbreak for people with dementia, which can be downloaded from their website. The plethora of zoom groups, including ‘singing for the brain’ groups amongst others, has encouraged new ways for people with dementia to connect and has been wonderful to see. It is heartening that communities have come together to fundraise to purchase tablets and other resources to keep people with dementia connected to the outside world. This offers some reassurance that though dementia may appear to be lost sight of at times in service planning and delivery, those with passion and empathy continue to do what they can to help.

Memory services have responded in a variety of ways to the pandemic, some suspending services altogether, some scaling down and others adapting using telephone or virtual consultation to ensure safety and infection prevention. A survey of memory service activity and the impact of the COVID-19 pandemic being carried out by the Royal of College of Psychiatrists will be particularly helpful in re-establishing activity in the ‘new normal’ context. Embracing new technologies such as virtual consultation in the community may be seen as an opportunity in some cases to complete necessary specialist assessments whilst avoiding the inconvenience of a visit to hospital. Increased access of community services to specialist geriatric medicine advice in some areas may be beneficial in facilitating provision of care at home and preventing an unnecessary hospital admission, especially as we have been aware for some time of how detrimental a hospital admission can be for some people.

The recovery phase of the pandemic will provide an opportunity to reflect, and to capitalise on successful innovations. Perhaps, more importantly, will be the need to support those experiencing the particularly cruel type of grief associated with dementia. As multidisciplinary professionals caring for older people, we will be part of that healing response. Some helpful resources are available from the British Psychological Society.

Dementia Action Week has been paused, but what we have seen is that dementia action certainly hasn’t, and continues around us regardless of the challenges. Let’s celebrate success, and continue to advocate for people living with dementia and those that care for them. Never has the symbol of the forget-me-not flower been more pertinent than in the current climate.