A dementia diagnosis often brings with it feelings of acute loneliness, so it seems ironic that, when you need your friends the most, they simply aren’t there.
When members of the new Unforgettable Dementia Support Group discussed friendships this week, many said they felt hurt or bewildered by other people’s lack of support. When friends drift away, it’s often because they feel awkward, afraid or wonder ‘what’s the point’ if the person they’ve always been close to can no longer remember their shared experiences.
However, recent research reveals that friendships can still flourish on the dementia journey – for those who choose to stick with them. ‘People who have remained engaged as friends after the onset of symptoms describe dementia as an impetus for personal and interpersonal transformations that can involve learning, growth and unexpected gifts – as well as sadness and loss,’ says Professor Janelle Taylor, from the University of Washington.
Fears about saying or doing ‘the wrong thing’ are also usually unfounded. ‘There is no instruction manual for interacting well with people who have dementia,’ adds Professor Taylor. ‘But friendships matter to adults with dementia for all the same reasons that friendships matter to anyone: They are sources of pleasure, support and social identity. ‘
Good friends can play an important role from the beginning, even helping to spot a potential problem, as Dianne can testify. ‘When a good friend suggested I saw a doctor, I decided to take her advice because I was feeling a bit low which was unlike me,’ recalls Dianne who was eventually diagnosed with early-onset dementia five years ago.
When Dianne later shared her dementia diagnosis with her friend, her reaction was again positive. ‘She was very pleased I’d told her and said it explained quite a lot,’ Dianne recalls. ‘She described how I’d gone to see her one day, sat in a chair and told her a story. I’d returned a few days later sat in the same chair and told the same story! I’d obviously been saying and doing things that were out of character for quite a while.’
If people with dementia need their friends around, so too do their family and carers who often report feeling isolated and lonely. In fact, many find the best way to combat feelings of isolation is to seek out new friends who understand what they’re experiencing.
‘Dad set up his own support group for couples with dementia,’ recalls Stephanie whose Mum has dementia. ‘They go to gigs, pubs, have meals at each other’s houses. It’s amazing. Their social life is sometimes busier now than before.’
Joy decided to do the same after her diagnosis with dementia on her 55th birthday.’ I’ve done everything I could to connect with other people, but it hasn’t been easy. Eventually I started my own group for people with young onset dementia, three people attended our first meeting and now we have 30 members, but best of all we really enjoy each other’s company and have a great laugh together.’