A shrinking world

For the last five months I’ve written about different aspects of the coronavirus pandemic. For August, I want to think about the consequences of the required reduction in social interaction on people with dementia during lockdown.

 

Is it all COVID’s fault?

Reflecting on this blog prior to writing it, I think it would be an applicable topic regardless of the presence of coronavirus in all of our lives. Why? Because whilst COVID-19 is blamed for a huge reduction in social interaction, the reality for people with dementia from all walks of life and in all countries around the world is that the development of dementia seems to dramatically shrink the person’s world anyway.

Everything from reducing the individual’s networks and social circle (including family and friends deserting the person), to restricting their recreational and employment opportunities (if applicable) and making essential elements of life like shopping and banking more difficult, it seems to be one of the most isolating conditions in the world. The nature of dementia also contributes to this shrinking world. So many people with dementia become more introverted, more afraid to go out, and become comfortable only within a very small space, often just certain rooms in their house or their bedroom in a care home.

This was certainly true of my dad, who stopped going out and eventually barricaded the front door with bricks because he believed undesirable people might try to get in. In his care home he spent far longer in his room than anywhere else, being a largely private man who had never been a great social butterfly. It’s also true of other people I know who are living with dementia who now won’t step outside their homes, not even into their gardens, and I see it extensively in my consultancy work with care homes where staff raise concerns because a resident doesn’t want to leave their room.

 

Coronavirus – Amplifying isolation

Coronavirus has, of course, amplified this extensively, with people I’ve spoken to saying that their loved ones have deteriorated further during lockdown simply because any limited social activity they were participating in ended. It doesn’t take long to lose key skills when they aren’t being maintained – As the old saying goes; ‘Use it or lose it.’

Given that these loses weren’t out of choice for anyone living with dementia it is of course all the more distressing for everyone involved, and it’s not just lost skills that are being seen. Loss of the recognition of family members and friends who the person previously saw regularly is also a big problem, and using technology to make video calls during lockdown hasn’t, in many instances, bridged the loss of actual human contact.

This is why so many families have been desperate to get back to visiting loved ones in care homes etc, but many of those visits have proven to be both highly emotional and incredibly sad if recognition has been lost or the person has dramatically deteriorated in other ways, for example physically. And it is worst still for families who’ve lost loved ones and weren’t even able to say goodbye.

 

What are the solutions?

Next month will mark the 9th World Alzheimer’s Month and the 26th World Alzheimer’s Day (21 September). This year the focus is on talking about dementia, a very timely topic given that the shrinking world so many people with dementia experience is often based on stigmatised views, misinformation and prejudice.

All of these elements can and must be tackled so that people don’t stay away from someone just because they have dementia. But that alone won’t stop what happens in a person’s brain when they themselves don’t feel comfortable in anything other than a small and familiar (usually indoor) space. So how can you help a person who feels like this? My tips include:

 

  • Don’t chastise or nag the person to do something that they don’t feel comfortable doing. It’s one of the most obvious reactions we all have:

“Come outside Brian, honestly, it’s lovely, come with me (takes arm or hand).”

Brian: “I don’t want to” (or perhaps Brian just resists being cajoled to move).

“Oh but of course you do, you don’t want to stay in here all day.”

No, Brian is quite clear, he doesn’t want to come outside. It doesn’t matter how lovely it is, how good it might be for him, how much he used to love it (he may not remember this), or who/what is waiting for him. He doesn’t feel comfortable, secure or inclined to follow this well-meaning person outside.

 

  • Replace chastisement or nagging with something more positive. Try to bring some of what is ‘lovely’ outside, inside. It might be flowers, scents, the feeling of grass underfoot, the sound of birds singing or trees rustling. Be the person who understands how Brian feels, empathises with his reservations about going outside and modifies your approach to meet his needs, meaning you are embracing his world rather than trying to drag him into yours.

 

  • In future offer (avoiding chastisement or nagging) and don’t try to be obsessively persuasive. I know when I don’t want to do something, I find the endless going on about it very annoying. For a person with dementia who may be struggling for the words to express themselves, the level of frustration they may end up feeling is likely to result in the person lashing out or doing something else that is labelled ‘Challenging behaviour’ (a term I hate), when in reality it’s been brought about by the approach of those around the person (a concept explored further in my blog, ‘Who is really challenging?’).

 

  • Find something that the person does want to do. So, they don’t want to leave their room, or their chair. They don’t want to move to the dining room, cross the front door step or sit in the garden. What might they want to do instead? Would some music they love or a craft activity (old or new) provide some enjoyment (however momentary)? Or perhaps some lifestory work, listening to an audio book or a task like sorting linen or cutlery. Don’t forget too, that things like exercise (if the person wants to pace etc), can be facilitated both inside and outside and in pretty small spaces too if needed.

Until next time…

You can follow me on Twitter: @bethyb1886
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WANT TO READ MORE OF MY CORONAVIRUS COVERAGE?

  • My March 2020 blog answered two key questions: How do we hand-wash more and how do we self-isolate?
  • My April 2020 blog addressed how families and their loved ones in care homes can cope with being isolated from each other.
  • My May 2020 blog gave tips on supporting a person with dementia during the pandemic.
  • My June 2020 blog looked at how family carers have been affected by lockdown.
  • My July 2020 blog looked at what ‘normal’ life could look like post-lockdown.

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