Loneliness is one of the most painful effects of dementia. But, says Philly Hare, there’s a lot we can do to change that.
If you or I have dementia, we will be lucky to get out of the house to do things in our local area more than once a week. And if we live on our own (as a third do), we will more than likely feel lonely. Evidence is mounting that loneliness is one of the most painful effects experienced by those of us affected by this increasingly common condition – whether ourselves or as carers. But there is so much we can all do.
In the last few days there have been several powerful reminders of this.
At a recent Dementia Action Alliance event, you could have heard a pin drop as Manjit Nijjaar, a young Sikh from Wolverhampton, painfully revealed the “very dark and lonely place” in which she found herself in caring for her father. Some members of her community actually vilified her for using formal care services so that she could continue working. Manjit has talked more about this here.
The following day a new report revealed that a third of people with dementia said they lost friends following a diagnosis, and more (39 per cent) said they felt lonely. One in 10 said they got out only once a month. Speaking at the launch, Dr Daphne Wallace, a former psychiatrist who has dementia, explained how even in rural communities, such as her own small Yorkshire market town, people with dementia are hidden away and have little contact with, or even awareness of, each other.
The good news is that we can all do something to break the link between dementia and loneliness. On the same day, I took part in a Dementia Friends training session, ably delivered by Angela Clayton-Turner, who cared for her husband for 18 years until his recent death.
Angela’s example of the difference a ‘Dementia Friend’ could have meant to her as a carer was simple. While queuing in a cafe and simultaneously trying to keep an eye on her husband from behind a pillar, another lady noticed her agitation and encouraged her to move to the front so she could quickly return to her husband. This simple act of kindness and recognition of Angela’s lonely life as a carer made her feel suddenly and hugely supported.
The hope is that, by 2015, one million of us will have become Dementia Friends, giving us the confidence to interact more fully with those we know or come across who have dementia. If you haven’t yet signed up for your local hour’s session, do it now!
At JRF we recognise the awful impacts of loneliness and are addressing it on many levels. We have drawn on our work in four neighbourhoods to suggest how neighbourhoods can be more supportive to all who experience loneliness. In our programme Dementia without Walls we are supporting practical work in York and Bradford to help both become dementia-friendly communities.
I cannot finish without mentioning another event on Tuesday, which sadly I couldn’t make – the funeral of Jenny Neal, who, with her husband Tony, did so much to support York’s aspiration to become a dementia-friendly city. By the time I met Jenny she had already lost the power of speech – but she was still out and about in York, demonstrating perfectly the importance of inclusion and community understanding to fend off the loneliness of dementia. Thank you, Jenny.