Support to ‘live well
Additional respite services and home-help hours are vital to help those with the condition and their families
Living well with dementia is possible if the right supports are in place, according to Dr Karena Meehan, head of the Later Life Psychiatry team in Galway West, but the reality is these supports simply do not exist in this country.
“We are good at diagnosing dementia and good in a crisis, it’s the bit in the middle that’s not so good. There has been a lot of progress made in terms of awareness at primary-care level and diagnosis,” Dr Meehan says.
“And there has been a lot of progress made in the quality of nursing-home care compared to 15 or 20 years ago. It’s the bit in the middle after diagnosis, where the person is slipping a bit but not at the point of needing full-time care, that needs to be improved.”
There are an estimated 60,000 unsung heroes in Ireland providing unpaid care to a family member or friend with dementia living in the community. An estimated 55,000 people live with dementia in Ireland and the majority of these are living at home.
Caring for a person with dementia, compared with other caring roles, places much greater demands and strain on family members, according to research. Carers struggle to cope, sometimes around the clock, with distressing behaviour such as repetitive questioning, sleep disturbance, and paranoia.
Dr Meehan describes caring for a person with dementia as “a slow bereavement” and points out that carers are at an increased risk of heart attack due to the immense stress of the role, and more than 50 per cent of those caring for a dementia patient at home have clinical depression.
“We have numerous couples who are determined to keep their husband or wife at home, at any cost. They often try not to lean on their adult children and to protect them from how bad things really are.
“Respite care can make such a difference for these people, who are under unrelenting pressure 24/7 – getting a few hours off to meet a friend for coffee or get their hair done. Or if they know they have a few weeks of respite a year, they can plan to go abroad and see grandchildren or book in for an operation or treatment themselves.”
Know the person
Whether it’s respite or full-time care, Dr Meehan stresses the importance for staff of getting to know the person behind the dementia. What does she like to be called? What does he really hate? Did they enjoy hurling?
“If you feel comfortable, secure and valued, you can have a really good quality of life even without memory and even if it’s not the same quality of life as before.
“We had one man who used to play international rugby so the family brought tapes of his games into the nursing home and the staff got to know him as he was before dementia.
“There was another man who used to be a cyclist so they brought a stationary bike into his room and he cycled away on it every day. It’s about being person-centred.”
Tom McCann, dementia nurse adviser for the Western Alzheimer’s Foundation, has a unique understanding of dementia as he saw his own mother’s gentle personality change after she was diagnosed with the disease. His family managed to keep her in her own home, but he admits it wasn’t easy.
“You have to try and separate the person from the person with dementia. I had to tell myself I was not dealing with my mother now, but my mother with dementia.
“My mother was a midwife so we got her a doll – it was the best thing for her because
Dr Karena Meehan (right), head of the Later Life Psychiatry team, at University Hospital Galway. Above: a recreational area at UHG’s acute adult mentalhealth unit.