Alistair Burns CBE, Professor of Old Age Psychiatry, University of Manchester
The worldwide effects of COVID -19 have been well documented but older people suffer the highest mortality and negative social consequences of the condition. People with dementia can experience a triple jeopardy in that they are more vulnerable, may be subject to negative discrimination and be less able to look after themselves. There is some evidence internationally that people with dementia lose out on health care decisions.
In England, there have been a number of issues around dementia and COVID which are important to highlight. We have articulated these around the dementia Wellbeing Pathway. This was originally developed to outline dementia care across the whole experience of a person with dementia, their family and carers. The five areas were: Preventing Well, Diagnosing Well, Supporting Well, Living Well and Dying Well. To bring it up to date for the COVID era, a sixth has been added – Treating Well.
We know that people with dementia, their families and carers tend to do less well when there is isolation and maintaining physical and mental health is key. Advice and guidance (both general and bespoke) is available to people with dementia and their carers [2,3]. Music has a lot to offer in terms of enhancing relaxation and bringing people together. The many virtual choirs which have sprung up during the lock down is a testament to the effect music has of knitting together individuals, families and their communities.
We saw that with the closure of memory services, where the majority of diagnoses are made, that there was a shortfall of as many as 10,000 people a month receiving a diagnosis. Some clinics embraced new ways of working in terms of remote assessment and we know that for many people signs of COVID were less often the traditional ones of high temperature, cough and breathlessness but symptoms such as confusion, loss of smell and gastrointestinal upsets.
Moreover, for people with dementia it may be difficult to describe and complain of symptoms and making clinical staff aware of the signs (things people observe), as well as the symptoms (what people complain of) was essential. In this way, it was similar to the assessment of pain in people with dementia.
There has been quite a lot of debate about how remote diagnoses can be made with an emphasis on what memory and other cognitive tests can be carried out on the telephone or via a video link. There is often concern on behalf of professionals about a lessening of the accuracy of the diagnosis but experience on the new way of working has been generally positive.
People with COVID often develop a delirium (a confusional state), which is marked by the upset and distress it can easily cause. Being aware of the signs and symptoms of delirium and intervening early is key. People with mild cognitive impairment and dementia may not readily appreciate the need for social distancing and may have problems in understanding the nuances of hand washing regimes. It is a challenge to adapt a personalised approach for people with dementia while addressing calls for sedation in individuals who walk with purpose. During the early months of the pandemic we saw a significant increase in the prescription of antipsychotic drugs for people with dementia. Adopting a personalised approach to treatment, becoming familiar with a person’s past history and the reasons for such behaviour were key and underpinned the need for personalised and bespoke person-centred care.
Supporting well and living well
Support is key and anecdotal reports suggested that people with dementia and their families were losing out disproportionately with the closure of services – particularly day centres and day hospitals. These reports from patients and their families emphasised the loss of abilities including language and memory during isolation. If there was ever a case to support cognitive stimulation and participation in activities, it is that withdrawal of stimulation has had a negative effect on people and their families.
Support for care homes was key and we provided information published on the Social Care Institute for Excellence website on some frequently asked questions around social care to do with managing individuals while wearing PPE and being able to engage, and communicate (as people said, ‘smile with your eyes’). The use of digital technology and digital communication greatly reduced that sense of isolation and loneliness but one has to guard against discriminating against people who did not have access to it.
Much attention was paid to optimising the lived experience of people with dementia during the pandemic by providing support and activities and emphasising the need for information. A musical guide for people with dementia and their carers during the crises was published emphasising the need for a personalised care plan .
The increased death rate of people in care homes and people with dementia has been well documented and we know that older people have higher mortality as a result of the illness. Early on in the pandemic, stories about blanket ‘do not resuscitate’ policies were quickly corrected with input from the learning disability community and the personalisation approach.
The specific nature of end of life care in people with dementia was highlighted with strands going through and reflecting the severity of the illness and the situation where visitors were denied access to see their loved ones who were dying in care homes. Being aware of the mental health care of care workers is essential. Many care staff regard their residents of members of their own family and so the burden and effect of many deaths cannot be underestimated.
At no other time has personalised care and the role, for example, of music in the management of people with dementia been so important. While the COVID pandemic has been a huge burden on innumerable people, as we move to the next stage and perhaps regard COVID as becoming endemic, there are opportunities to relook at the way social care is viewed and supported in the country.
Looking at innovative ways in which people with dementia can be diagnosed and given the quality of life they deserve by emphasising the personalised bespoke approach to the most vulnerable in our society cannot be underestimated.
ALISTAIR BURNS CBE FRCP, FRCPsych, MD, MPhil
Alistair Burns is Professor of Old Age Psychiatry at The University of Manchester and an Honorary Consultant Old Age Psychiatrist in the Greater Manchester Mental Health NHS Foundation Trust. He is the National Clinical Director for Dementia and Older People’s Mental Health at NHS England and NHS Improvement.
He graduated in medicine from Glasgow University in 1980, training in psychiatry at the Maudsley Hospital and Institute of Psychiatry in London. He became the Foundation Chair of Old Age Psychiatry in The University of Manchester in 1992, where he has variously been Head of the Division of Psychiatry and a Vice Dean in the Faculty of Medical and Human Sciences, with responsibility for liaison within the NHS. He set up the Memory Clinic in Manchester and helped establish the old age liaison psychiatry service at Wythenshawe Hospital. He is a Past President of the International Psychogeriatric Association.
He was Editor of the International Journal of Geriatric Psychiatry for twenty years, (retiring in 2017) and is on the Editorial Boards of the British Journal of Psychiatry and International Psychogeriatrics. His research and clinical interests are in mental health problems of older people, particularly dementia and Alzheimer’s disease. He has published over 300 papers and 25 books.
He was made an honorary fellow of the Royal College of Psychiatrists in 2016, received the lifetime achievement award from their old age Faculty in 2015 and was awarded the CBE in 2016 for contributions to health and social care, in particular dementia.