Dementia in lockdown

There has been a lot of talk about how people living with dementia will cope with COVID-19. When we think about it, let’s ask ourselves “what will change for them?” Considering life in the average Care Home for a person living with dementia, how often do they go on outings? How often do they get to walk to the shops, go and buy an ice cream, have a glass (or two) of wine? How often do they get to decide, on the spur of the moment, to go and visit a family member? Let’s face it, most people living with dementia are in a continuous state of lockdown, either literally, figuratively or both.
We have become so used to the living arrangements that have become the status quo and accepted norm for those living with dementia. Up at 04h00, sitting in the lounge, breakfast, lunch, supper, teatime, bedtime. Maybe a bit of singing here and some colouring there, one day floating into the next. Tuesdays Bingo, Sunday church.
So many of us are going through a tough time at the moment. We know this is temporary. We are not confused or forgetful. We are mostly in our homes, we can determine our own pace and do our own thing. We can read, write, cook, play with the dogs, sit in the garden. And yet, we mostly feel completely overwhelmed, anxious, depressed, helpless. ALL. THE. TIME. We wake up at odd hours of the night, we are grumpy, irritable, weepy. Aggressive. Snappy. I find that I wander up and down the garden. I go from the couch to my desk, then before I know it, I am lying on my bed at 11h00, having a nap.
For those working in Aged Care and with people living with dementia, does the above sound like most of your residents? If you took them to the doctor and described these behaviours, I can guarantee you that, without hesitation, the diagnosis would be “behavioural and psychological symptoms of dementia.” Done. Dusted. Medicate. Whilst many specialists would note that “non-pharmacological interventions” should be the first port of call, the offerings are mostly patronising and often elicit more distressed reactions.
Very few of the above mentioned reactions are directly related to the cognitive impairment of the person living with dementia. They are often the result of frustration as a result of being locked in, restrained and bored. The feelings of having no agency, of not having much choice, etc. I think you get the message, as this is exactly what many of us are experiencing at the moment.
Will COVID-19 bring us to a point where we can actually begin to see what the impact of a “lockdown” is? Will we begin to see how our well meaning approach to institutional care can be so detrimental to the wellbeing of the most vulnerable people in our society? How taking away agency and freedom and choice can lead to reactions that in turn lead to a further decline into a lifelong prison sentence?
Let us open our eyes and ears and hearts and minds to see and hear and feel and think differently, now that we have experienced the horridness of a loss of agency. For those of you who manage to do all the gardening you ever wanted to do, learning new skills, catching up on the backlog of filing and writing and learning new skills during this period, I salute you. For the rest of you feeling as down and unproductive as I am, let’s talk about the plight of people living with dementia…and take your pick of which of the “non-pharmacological interventions” listed below you think would choose to make you feel better right now..
Table 2. Non-pharmacological management strategies General principles • Provide a ‘dementia-safe’ and friendly environment • Maintain a set routine • Avoid over-stimulation • Psychoeducation for family/caregivers • Adequate training for caregivers • Reminders and repetition of information • Orientation with clocks, calendars, newspapers • Regular social interaction and activity Behavioural • Regular exercise • Wandering paths (secure) Psychosocial interventions • Reminiscence therapy • Validation therapy • Resolution therapy • Pet therapy • Respite care to relieve caregiver burden • Supportive counselling for family members, e.g. dementia support groups 1) Management of behavioural and psychological symptoms of dementia With the steady rise in numbers of the world’s elderly population, the behavioural and psychological symptoms of dementia (BPSD) have become increasingly relevant to both clinicians and families. Carla Patricia Freeman, MB ChB, FCPsych (SA) Department of Psychiatry and Mental Health, University of Cape Town Carla Freeman is a psychiatrist currently sub-specialising in the field of neuropsychiatry at the Department of Psychiatry and Mental Health, University of Cape Town. Her areas of interest include substance abuse in the context of HIV infection and old-age psychiatry. John Joska, FCPsych (SA), PhD Associate Professor and Head of Division of Neuropsychiatry, Department of Psychiatry and Mental Health, University of Cape Town John Joska is programme manager for HIV psychiatry and Cape Town Metro West old-age psychiatry.

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