A project to bring South Asian music and dance to people with dementia will be showcased next month at Bloomsbury Theatre. Dr Naaheed Mukadam, the researcher behind the project, shares her experiences of this project.
I have been a dementia researcher for more than 15 years and have always focused on ethnic inequalities, initially in the diagnostic pathway and more recently in genetic risk, prevention and post diagnostic support.
My research has highlighted the stigma that can exist around memory loss and dementia and I have tried to counteract this during my career so far. I am used to the scientific method – hypothesis testing and use of both qualitative and quantitative methods to answer specific questions. However, after attending public engagement workshops at UCL and reflecting on the power of personal stories in connecting with others, I started to think about how else I could go about capturing the experiences of those with dementia and those who care for them. Music was one way of connecting that I thought would be quite universal.
While we are all adjusting ourselves mentally to the viral pandemic, spare a thought for those with the most severe mental disorders and people caring for them. Helen Killapsy, Professor of Rehabilitation Psychiatry, Division of Psychiatry, UCL writes about people living in supported accommodation often staffed by people who are neither NHS or local authority care staff.
The COVID-19 emergency presents an unprecedented challenge to us all, but people with particularly complex mental health problems need special consideration. Around 20% of those who develop a major psychotic illness such as schizophrenia or schizoaffective disorder have ongoing symptoms that don’t respond well to the usual medications or treatments. For this group, there are often accompanying cognitive and functional impairments that impact negatively on the person’s interpersonal skills and ability to manage basic everyday tasks such as self-care, cleaning, shopping and cooking. Mental health rehabilitation services work with people with problems such as these. Due to the severe nature of their symptoms, more complex medication regimes are commonly needed, including clozapine, long acting injectable antipsychotic medications and mood stabilisers, that require regular administration and monitoring through routine blood tests. Many will also have long term physical health conditions as well, including pulmonary and cardiovascular illness which put them at greater risk of more severe infection and, potentially, death from COVID-19.
There are about 5000 inpatient mental health rehabilitation beds in England provided by the NHS and independent sector. In the community, around 30,000 people with complex mental health problems live in supported housing services provided by the non-statutory and voluntary sector, where non-clinical support staff are available up to 24 hours a day to help people manage their activities of daily living, supervise their medication and enable their engagement in community based activities that promote recovery, such as leisure, education and supported employment. Community mental health rehabilitation teams operate in about half of NHS mental health Trusts across England to provide specialist clinical input to people with complex mental health problems living in supported accommodation. In areas where there is no community rehabilitation team, this function is provided by a standard community mental health team.
Over the last few days, it has become clear that staff working in inpatient and community based rehabilitation settings are really struggling to help service users follow Public Health England (PHE) guidance on handwashing, social distancing and self-isolation to reduce the spread of COVID-19. Due to their mental health problems, many service users find it difficult to concentrate and take on board instructions. Many cannot understand the importance of following the advice and staff cannot enforce it. As the number of cases rise and staff fall sick or have to self-isolate, the system’s ability to provide the essential treatment and support that this group need will come under immense pressure. The situation is further exacerbated by a lack of clear guidance about the use of, and access to, Personal Protective Equipment (PPE), particularly for staff working in mental health supported accommodation, some of whom are questioning whether they should come to work unless PPE is available. The British Medical Journal has just published a stark warning about the risks of a lack of PPE in care homes (1) but supported housing services also need to be included in planning and guidance.
Most staff working in supported housing have no previous experience of working within a clinical environment and urgently need training to know how and when to use PPE. Furthermore, supported housing services vary widely in configuration, with some provided in communal settings and others providing on-site staff support to people living in individual or shared apartments. Generic guidance for supported accommodation services about managing COVID-19 needs to be interpreted locally for each individual service. Local Authority and NHS mental health rehabilitation leaders need to work together urgently to provide tailored advice to enable these services to keep operating and to provide support as safely as possible. Arranging additional cleaning services seems an obvious priority, alongside staff trying to restrict the number of service users using communal areas at any one time, through advice and notices. Stopping group activities and closing off communal areas has been suggested but could make the situation worse in buildings with limited space if it leads to people crowding together in corridors. Further discussions will be needed about the ethics of applying PHE’s legal powers to contain individuals with severe mental health problems who are unable to follow Government guidance on social distancing and self-isolation.
In this national emergency, it seems clear that those with the most severe and complex mental health needs are going to be at significantly higher risk of negative outcomes. The situation is similarly bleak for others with high support needs, such as people with dementia or more severe intellectual disabilities. At present the COVID-19 case reporting processes do not include the level of detail that would inform the relative prevalence of suspected and confirmed cases and deaths amongst groups of people with different types of mental health problem. Initial guidance published by the Royal College of Psychiatrists for mental health clinicians on managing COVID-19 has, understandably, not yet been formulated to include the specific needs of all sub-groups (2). The appalling example of the abandoned residential care home in Spain provides a worst case scenario of what a collapse of the supported housing system could mean (3).
We need to act now to prevent a catastrophic failure in care for those in our society with the highest vulnerability. We are therefore working at pace with colleagues from NHSE and the Royal College of Psychiatrists to use existing systems for gathering facts and figures as well as more open-ended feedback from mental health rehabilitation clinicians to monitor the situation for people with complex mental health problems and to share examples of good practice and creative problem solving. This kind of activity may not win accolades as ground-breaking research, but it is an essential, concerted and constructive response that will inform practical guidance needed right now for those working in one of the many COVID-19 ‘front lines’.
London, 30th March 2020
Further reading
Gareth Iacobucci. COVID-19: Lack of PPE in care homes is risking spread of virus, leaders warn BMJ 2020; 368.m1280 (Published 27 March 2020)
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