When the effects of dementia start to hit, it may not only be the sufferer who feels that they’re losing their mind. That person’s husband or wife is instantly transformed into a full-time carer, and along with the loss of physical freedom this entails, the distress experienced through seeing your loved one gradually “disappear” can give rise to feelings of isolation, depression and debilitating despair.
Finding a community of other people who face the same challenges and can offer emotional support and a shoulder to cry on can pose almost insurmountable practical problems for carers of people with dementia. Being tied to the house and responsible for your partner’s well-being 24/7 is hardly conducive to attending regular group support sessions. And besides, the worst crises often hit at the times you’re most alone. It’s unlikely that you’ll conveniently come to the end of your tether at 10.30am over a cup of tea and a digestive during the Alzheimer’s Society weekly meeting at your community centre.
Step in the new online support communities. Available round the clock, you can log on at any time of day or night to get information, and engage in a bit of chatroom banter with someone who knows exactly what it’s like to be in your shoes at 3am, having just persuaded your confused spouse out from the deepest recesses of the cellar, stripped them of soiled clothing, cleaned them up and changed their incontinence pad for the fourth time that night.
This was the rationale behind the establishment of the Dementia Café website, run by Liverpool-based charity PSS (Personal Service Society).
“There are a lot of people throughout society who are affected by dementia, and they and their carers become extremely isolated, often because they either don’t meet the [local authority] criteria for getting any practical support, or there’s the stigma of asking for help,” explains Pam Stopforth, the PSS dementia development co-ordinator.
Having a place to go that offers some mental respite and companionship is vital to building a carer’s resilience, and since www.dementiacafe.com went live in April last year, it’s been the chatroom which users have valued most.
Open for informal e-conversations between members at any time of day, there is a weekly two-hour “hosted” session each Tuesday night when Stopforth is online and can “meet’ members and chat around any topic, however weighty or trivial, while making available the benefit of her professional expertise. The chatroom is also monitored on a daily basis by PSS staff who will answer individual’s questions and send through useful links to information resources that might help their particular situation.
Pat Davin is a regular visitor to the chatroom. She’s cared for her husband, who suffers from Alzheimers, for the past four years, and says, “It’s the moral support I get there as much as anything else, which is good.”
And Sandra Senior (pictured above), who also cares full-time for her husband Roy, says that the companionship of the Dementia Café helps to alleviate the loneliness she feels now that she’s no longer able to go to social events such as her weekly bingo evening.
“Since I found out about the chatroom, I’ve never been off it! It’s mainly if I’ve got a grump on, you know, with something that’s come up. Like not knowing if Roy was getting incontinent. You need to be able to ask someone these things, as backup, because with this illness you’re learning all the time every day something new will happen that you don’t know about.”
In addition to the chatroom, there are individual forums on the website which deal specifically with support services, access to finance and assistive technologies.
One Surrey-based member has posted a question about training for her dad who is a carer.
Better up north
“I see there are some great training things going on up North. Does anyone know of anything going on in the South (London-ish) way. This is where my parents are based, and I think my Dad would really benefit from a course in caring for people with Alzheimers. Seems to me that services in the North are much better?”
She is signposted to the Alzheimers Society, but returns to the forum to post a response saying they don’t operate courses in her area. An online conversation ensues in which the PSS moderator suggests that the charity’s own training in Liverpool might be delivered in southern counties.
It’s this instant access to expert and informal advice and support, at the time that the user needs it, which seems to be the secret of the Dementia Café’s success.
“We work hard to make all the information current, updating constantly with new policy and information that might be useful, and links to other organisations that we’ve found out are offering courses or other resources,” says Stopforth.
Having used the website and chatroom for five months now, how would Sandra Senior feel if she wasn’t able to log on?
“I’d feel totally lost. I do get tired, I get exhausted, but they’re so caring, the team who run it, and when someone logs on, everyone who’s in the chatroom says ‘hi’. So you can share, and you’re all carers, in the same position, and that really does help. Someone will tell you, ‘don’t worry about it, that’s normal’. It’s a relief.”
This article appeared in the 27 March issue under the headline “Cafe Direct”