The Reality of Caring for Someone With Dementia

Stressful but rewarding, especially for those that have cultivated resilience
By Warren Donnellan, University of Liverpool
June 6, 2019 Updated: June 6, 2019

Dementia is set to become one of the biggest global health challenges of our generation. In the United States alone, there are about 5 million people living with the disease, and this figure is projected to more than triple by 2050.

Those of us who don’t develop dementia will probably end up caring for someone who does. According to the Centers for Disease Control, more than 80 percent of people with Alzheimer’s disease and related dementias are receiving care in their homes. That’s 15 million Americans who provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias every year. This makes dementia carers an invaluable resource for both the people they care for and society as a whole.

As a psychologist, I am fascinated by the hidden strength that enables some carers to thrive—something that researchers term “resilience.” It is defined as “the process of negotiating, managing and adapting to significant sources of stress or trauma.”

In our earlier research from 2014, we examined whether twenty different spousal dementia carers could achieve resilience and, if so, what resources they drew on to facilitate their capacity for resilience. We found that just under half of the carers were resilient under the definition given above. Research shows that resilient dementia carers are more likely to be protected from depressive symptoms. Dementia carers are typically more depressed and have lower levels of well-being than non-dementia carers. Resilient carers are also less likely to admit their loved one into residential care prematurely.

Strength and Courage

As part of our research, Mrs. Wi, a 69-year-old woman who had been caring for her husband for four years, explained her role as “a contract you would never sign up for.” But despite acknowledging the burden of caregiving, Mrs. Wi accepted her husband’s diagnosis and put measures in place so that he could continue to live independently: “He used to go out every Monday and every Friday playing snooker and that hasn’t stopped … I’ve told his friends right from the beginning about [him] having Alzheimer’s.”

Another carer, Mrs. C, showed no signs of distress and adopted a positive outlook throughout the nine years she had been caring. With reference to her husband’s diagnosis, Mrs. C said: “I tried to be positive and say all they’ve done is give it a name. You’re still the same person you were yesterday.”

I interviewed the carers twice between 2011 and 2014. During that time, a lot had changed. All reported deteriorating health of their loved one, some had admitted their loved one into residential care, and others had been bereaved. Some had been through both. And yet more people had become resilient than not. This suggests that resilience is not fixed—carers can become resilient despite the stress associated with caregiving.

Singing and Laughing

It is clear from our research that humor and positivity are important facilitators of resilience, as Mr. G explains: “I laugh and I sing and she laughs … My neighbor said it’s a good job we’ve got a detached house.”

Social support is also important, especially from friends, according to Mrs. L. “We are like family … we exchange sad stories or glad stories every week … I think that’s why I’m so stable because I talk to so many people who are in the same boat.”

Carers who engaged in services that enabled them to “give back” were also more likely to be resilient: “I do voluntary work … I’m a carer talking to the carers … I know it sounds daft, but it’s a breakaway, it’s different, and yet you’re helping others,” said Mrs. Wi. Family support was valued by all carers who had access to it, but only on their own terms, so as not to relinquish feelings of independence and autonomy.

Of course, no one would deny that dementia care is stressful, but it’s clear that many carers have successfully adapted to their role. They draw on their own individual characteristics and resources within their immediate and wider social environment to build their capacity for resilience.

This is important because it shows that people can live well as dementia carers. Current research and dementia care services are typically problem-focused and designed to alleviate the burden in carers. But by promoting resilience and the positive and rewarding aspects of caregiving, we can help to improve the day-to-day lives of both carers and the people they care for.

 is a lecturer at the University of Liverpool in the UK. This article was first published on The Conversation.

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