Non-memory led dementias: care in the time of covid-19BMJ 2020; 369 doi: https://doi.org/10.1136/bmj.m2489 (Published 30 June 2020) Cite this as: BMJ 2020;369:m2489
- Aida Suárez-González, senior research associate,
- Nicola Zimmermann, direct support services lead at Rare Dementia Support,
- Claire Waddington, research assistant,
- Olivia Wood, research assistant,
- Emma Harding, research associate,
- Emilie Brotherhood, research associate,
- Nick C Fox, professor of neurology,
- Sebastian J Crutch, professor in neuropsychology
Carter raises concerns about the vulnerability of people living in care homes, including those with dementia.1 Non-memory led dementias account for around 15% of all dementia cases.2 They are relatively more common in younger people (under 65 years) who do not fit with societal perceptions of dementia, making their disability and support needs less noticeable. Dementias such as behavioural variant frontotemporal dementia (bvFTD), posterior cortical atrophy (PCA), and primary progressive aphasia (PPA) have phenotype specific symptoms that increase the challenges of keeping them safe from covid-19 and exacerbate pressures on care.
Changes in behaviour typically seen in bvFTD, such as lack of insight, behavioural disinhibition (such as approaching and touching strangers), and compulsive behaviours (repeatedly walking the same route, for example) make managing in lockdown extremely difficult. Tailored advice is needed in these cases—such as persuading one of our patients with a “hyper religious” compulsion to attend online services instead of daily mass.
People with PCA live with progressive visual impairments that lead to greater reliance on touch (such as holding handrails to reduce the risk of falling), which might increase the risk of covid-19 infection. For people with PPA, condition specific communication challenges also increase vulnerability (for example, semantic breakdown limits understanding of concepts like “virus,” “mask,” or “soap”).
The past few months have seen a doubling of calls to the UCL led Rare Dementia Support service (www.raredementiasupport.org) concerning areas such as loss of day care services, adjustment to isolation, hygiene maintenance, and hospital admission. In response, the service launched a covid-19 emergency kit, increased phone and email support, established information based (such as care planning) and experience based (such as loss of independence) small online discussions, and facilitated member-to-member virtual buddying by videoconference.
We need to provide informed support to sustain care and carers and protect those with non-memory led dementias from covid-19.
Competing interests: NZ, CW, OL, and SJC report no competing interests. NCF has served as scientific advisory board member for Roche and Biogen and received non-financial support from Eli Lilly. AS-G reports fees from MedAvante Pro-Phase. All reported financial activities are unrelated to this correspondence.
Full response at: www.bmj.com/content/369/bmj.m1858/rr.
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