The roughly 850,000 folks residing with dementia within the UK have been badly affected by COVID-19. Many reside in care houses, which have arguably been hit hardest by the pandemic, experiencing a heavy loss of life toll in the course of the first wave.
The pandemic has additionally prompted important international disruption, affecting folks’s each day lives, psychological well being and wellbeing. The estimated two-thirds of individuals with dementia who reside in the neighborhood could also be significantly susceptible to the results of this disruption, and face distinct challenges when transitioning out of lockdown.
I’ve carried out analysis with Professor Pam Briggs at Northumbria College to look at how COVID-19 has impacted these people. We interviewed folks with early- to middle-stage dementia about their experiences of the pandemic, conducting these between June and July 2020, as lockdown restrictions first began to ease within the UK. Right here’s what we found.
Lockdown’s adverse results
Individuals with dementia felt their signs deteriorate throughout lockdown, reporting adjustments in speech, reminiscence, focus and stability. This mirrors the findings of a survey carried out by the Alzheimer’s Society of individuals with dementia and their carers, through which 82% of individuals reported a rise in signs amongst folks with dementia.
The folks we interviewed attributed these adjustments to an absence of cognitive stimulation and lack of routine. They have been not in a position to participate in actions they discovered stimulating or significant, equivalent to tending to allotments, attending help teams or strolling teams. As a substitute, they have been restricted to extra mundane duties, which appeared to negatively have an effect on their dementia and self-worth.
Individuals with dementia additionally had restricted entry to their regular help networks, together with mates, household and others with dementia. Consequently, individuals reported feeling lonely or socially remoted, and a few skilled signs of despair.
We discovered that these elements then impacted individuals’ confidence to take part in a post-lockdown society. For instance, one particular person mentioned:
Getting my confidence again goes to be a problem. I’ve been put in a state of affairs the place I’m remoted and don’t actually have something to do with anyone else for the previous few months. So I feel really getting again to normality appears as huge of a step as going into lockdown.
In a 2010 examine, researchers discovered that familiarity with the outside was key for enabling folks with dementia to spend time exterior. But for folks with dementia, the surface world has turn out to be more and more unfamiliar. They might discover completely different store layouts disorientating, indicators and flooring markings complicated, and folks in masks unsettling or obscure.
The folks we interviewed expressed considerations about their capability to comply with security procedures and have been usually nervous about how others would react in the event that they did one thing mistaken. One particular person mentioned:
Individuals aren’t contemplating the issues that folks with dementia might need remembering the principles. I feel that’s stopping lots of people going out; it’s actually stopping me.
Nevertheless it wasn’t all unhealthy
We discovered there have been additionally surprising, constructive penalties of lockdown for some folks with dementia. They reported feeling protected and safe of their “lockdown bubble”, which offered a break from the loudness and busyness of on a regular basis life.
Others mentioned lockdown offered them with a protected area to be taught new expertise or return to previous hobbies equivalent to crafting, gardening or images. Lockdown offered alternatives for achievement for some folks, the place they didn’t worry failure. One particular person mentioned:
I haven’t needed to exit of my manner. I haven’t needed to stress about issues. I haven’t needed to fail, which has been an enormous a part of my life the previous few years.
Clearly, we should work in the direction of making a extra inclusive society, through which folks with dementia really feel empowered to pursue achievement and interact in actions they discover significant.
Our analysis confirmed there was a rigidity between the surface world being a supply of hysteria and the house surroundings being a protected area for folks with dementia. This rigidity prompted some folks to really feel anxious and reluctant to enterprise into the surface world put up lockdown.
Exiting lockdown this time
It’s important that folks with dementia are supported by carers, companies, organisations, the federal government and wider society when transitioning out of lockdown. Sadly, we discovered that folks with dementia felt “forgotten” and “deserted” by society in the course of the pandemic and felt there was an absence of help when exiting the primary lockdown.
At a private degree, it is very important do not forget that folks with dementia could face difficulties remembering the principles – they could not be capable to put on a masks or perceive why they should put on one. In someplace like a grocery store, they could discover it tough to comply with signage. Keep in mind to deal with these folks with persistence, kindness and compassion.
At a wider degree, it’s critical that dementia-friendly practices adopted by many shops earlier than the pandemic – equivalent to clear signage, sluggish purchasing lanes and workers who’re seen and skilled to help clients with dementia – are usually not deserted. Steering needs to be communicated clearly, concisely and in a wide range of accessible codecs. Importantly, folks with dementia needs to be consulted to develop responses that promote their wellbeing and social inclusion.
The Alzheimer’s Society has recommendation for supporting an individual with dementia at house in the course of the pandemic.
In the event you want dementia help and recommendation, you may communicate to the Alzheimer’s Society on its Dementia Join help line – 0333 150 3456.
The Alzheimer’s Society additionally affords on-line help.
If you’re a carer for an individual with dementia, Carers UK affords assist and recommendation.