Rural men may find themselves switching from breadwinners to bread makers when their wives are diagnosed with dementia.
Statistics indicate more men will become caregivers to their spouses in coming years because as they age, more women are diagnosed with dementia and Alzheimer’s disease.
Ryan Waldorf, a nursing instructor at the University of Lethbridge, explored the lives of 12 rural men who care for wives with dementia. He used the data to successfully defend his masters thesis but in the course of his research, he came across stories of change and heartbreak.
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“Essentially I just wanted to see how husbands caring for their wives were managing in rural areas,” said Waldorf.
The answers varied but he emerged with the view that rural men need more support in their roles as caregivers.
“For future work, I would like to do a bigger provincial study and then I would be able to draw more conclusions and make more recommendations.
“I would love to have a voice, especially for rural male caregivers, at the provincial level, because they’re overlooked.”
Waldorf spoke with one man who said friends, neighbours and even family drew away from him and his wife when she developed dementia.
“He joked about it but he said he was going to pound a sign on his front lawn saying dementia is not contagious,” said Waldorf.
It is a sign of the stigma that can be associated with degenerative mental illness and people’s uncertainty about how to react.
Waldorf has worked in a locked dementia ward and has seen the benefits of social contact with patients.
“Individuals who had visitors on an ongoing basis, it just seems that they’re calmer and more at peace.”
Waldorf’s research indicates about 41 percent of caregivers are men and most are age 60 and older.
Though men are slowly closing the gap, women still live four years longer than men on average and once diagnosed with dementia, women will live 6.7 years compared to 4.6 years for men with the same illness.
Women make up 72 percent of all Canadians diagnosed with Alz-heimer’s, said Waldorf.
Despite having fewer services, the rural men that Waldorf interviewed all spoke of their connection to farm and community.
One said neighbours recognize his wife when she wanders and are able to find him or others to help.
Another said the family dog accompanies his wife on her walks and is able to guide her home when she becomes disoriented.
But rural life also means greater distance to services and potentially less available information on help that’s available.
For example, one man paid more than $12,000 to get his wife’s cavity filled. Anesthesia was needed because of his wife’s fear of strangers and that required three trips by ambulance to the city for pre- and post-operative checks, plus the procedure itself.
Some of Waldorf’s interview subjects had to return to work or sell land to finance their wives’ care.
“Some of them had exhausted their pensions or their savings,” he said.
They also had what amounted to a second job as caregivers to their wives and were faced with watching their partners’ gradual deterioration.
“One man called it dying by inches,” said Waldorf. “With dementia, you lose a little part of them every day. He said it was ex-cruciating.”
Surprisingly for Waldorf, his interview subjects didn’t talk about their hopes for a cure. Instead, they wanted speedier diagnoses so their wives could receive treatment to delay onset of the symptoms.
“Sometimes a diagnosis wasn’t quick to get, or some of the rural physicians … were hesitant to give them the diagnosis.”
Subjects identified the need for more information about respite, emotional reactions, care-giving essentials and self-care.
Waldorf said he is encouraged by the Alberta government’s plan to develop a dementia strategy by the end of this year. Caregiver support is one of the pillars.
As well, the federal government is looking at caregiver preparedness on a national level for those dealing with dementia and Alzheimer’s patients.
However, Waldorf said some European countries have had systems in place for years to care for those afflicted and assist those who care for them.
