Summer time for many people represents more time spent outdoors with long, bright days and holidays away from home. But, spare a thought for family carers of people with dementia where the long summer days can bring back memories of easier times when now, many are stuck at home due to inadequate support or respite services.
Ann Twomey cared for her husband who had dementia and now volunteers as an advocate for carers. "The role of the carer for someone with dementia is physically and mentally draining, daunting and heart-breaking which is compounded by the lack of understanding of people with the condition. People rarely ask you how you are," she says.
Flying can be a problem as it's very disorienting but it's great to go away with sons/daughters and their children
Twomey says that when a spouse has dementia, it is a good idea to go on holidays with other family members if possible. “Flying can be a problem as it’s very disorienting but it’s great to go away with sons/daughters and their children. Grandchildren can be fantastic as they actually understand things very well,” she says.
Twomey adds that spending time outdoors, having picnics – particularly in natural settings – can work very well when the person with dementia is still able to get out and about.
Jacqueline Keane looked after her husband for over 10 years before he moved into a nursing home. In the last few years of caring, she got four weeks of respite care spread out throughout the year. "I was lucky to have respite but it takes time to prepare to go away and it is exhausting being away for a week because you don't really have the time to unwind when you've been so intensely busy. But, I was totally grateful for the break."
Laura Reid is the full-time carer of her mother Nora who has dementia. She and her husband, David Costello, moved back into the Reid family home just after the birth of her first son (she now has two boys, Thomas aged 2 and Matthew aged 8 months) so that they could take care of Nora as part of their normal family life.
Earlier in the summer, we went back to visit where Mam grew up in Sligo and she got great enjoyment for being there
“We have a really happy home which surprises some people. My mam is part of everything we do and in the summer time, we have more opportunities to go out for walks and interact with the neighbours,” says Laura who gave up work to look after her mother and her two sons. Laura’s father died when she was 10 years old.
Laura says that it’s much better for people with dementia to remain in their family home if possible. And the contact with neighbours and familiar surroundings helps. “Earlier in the summer, we went back to visit where Mam grew up in Sligo and she got great enjoyment for being there,” she says.
More recently, Laura herself took a holiday with her husband and sons while her sister looked after their mother. “It’s very important for us to take a week off so we can go back with our batteries recharged. We’re a family of caregivers but I’m aware that summer time can be very difficult for people who don’t have any support as there is very little respite available. It must be heartbreaking for people to see good weather and not be able to go out. The days must feel very long,” she says.
Most people have no idea how isolating it can be to be the full-time family carer of someone with dementia, according to new research launched this summer by researchers at Trinity College Dublin.
“There is a terrible loneliness. People say to me that my husband looks well and that I’m lucky to have him but there’s nothing in the evenings. The person he was isn’t there anymore and that’s especially noticeable because we had a good relationship and used to do so much together,” says one woman who attended the launch of the study.
The De-Stress study of 200 carers – the largest Irish study to examine the wellbeing of people caring for their spouse with dementia – found that psychological and behavioural symptoms of dementia were the most stressful for carers.
The study also found that there were high levels of mental health issues, particularly depression and anxiety among the carers surveyed. Two thirds of the spousal carers who partook in the study were women and half of all people interviewed were aged between 65 and 74. Nearly half of those surveyed said that they spent all of their waking time looking after their spouse.
Although the majority of carers said that that they partook in social activities on a weekly basis, the lead researcher, Prof Sabina Brennan urges carers to look after themselves. "It is sensible, not selfish to look after your own health and make a point of seeking social contact," she says.
The majority of people with dementia live at home and the number of family carers in Ireland is estimated at 180,000.
Sleep deprivation was the strongest memory of one carer who told me she was constantly on edge
The Alzheimer Society of Ireland, who cofunded the study with the Health Research Board offers support and advice to carers. These include a national helpline, social clubs, support groups and personalised dementia adviser services.
The society also campaigns for better understanding of dementia so that those with the condition and their carers can spend time out and about, partaking in social activities like playing cards or going to bingo – even if the person with dementia can no longer actively partake.
Pat McLoughlin, the CEO of the society, says that he hears lots of stories from carers as he travels around Ireland visiting support groups. “Often, carers have very little State support or very little assistance from other members of their family.
“Sleep deprivation was the strongest memory of one carer who told me she was constantly on edge. And, often we find that if a person dies or goes into residential care, the carer gets involved in committees, fundraising or volunteering.
“Our message to the Government is that these people need to be better supported to do the work they do that saves the State up to €807 million a year.”