Loved One’s Dementia Affects Spouses, Adult Children Differently

Caring for a person living with Alzheimer’s disease or a related dementia is among life’s most loving duties. It is also one of the most stressful. Nearly 60 percent of family caregivers for those with dementia say the emotional strain is high or very high and over a third suffer from depression, according to the Alzheimer’s Association. Spouses and adult children make up the majority of people providing this care and, while their tasks may be the same, they experience the impact of their loved one’s disease in different ways.

“For many spouses of people living with dementia, the disease comes at a time when they have created many other plans—retirement should be a time for reconnection and a return to shared activities and travel,” said Juliet Holt Klinger, senior director of dementia care for Brookdale. “Spouses can have a profound sense of grief around what the disease has robbed from their relationship and can often feel a unique sense of abandonment.”

As the condition progresses, it affects the fundamental nature of the marital relationship.

“As the disease progresses, the marriage can change from a romantic partnership with all its intimacies, to a care partnership,” she said. “The loss that is felt can be profound.”

Social situations can underscore what has been lost, she said.

“Many times spouses find difficulty with continuing on with a social life in the absence of their loved one with dementia. They are not technically single, but no longer have the person by their side in social situations either,” Holt Klinger explained. “This can cause the non-effected spouse to withdraw from activities as well which can be dangerously isolating.”

Even if duties of caregiving start to become too much to handle, spouses can be resistant to accept help.

“When we marry, we make a solemn vow to care ‘until death do us part’ and many spouses feel as if they are breaking that vow if they no longer care for their husband or wife at home.” Holt Klinger said.

For adult children, a parent’s dementia represents a painful role reversal.

“For adult children the experience can be different. It can be very painful to watch our parents change and begin to rely more on us as a result of dementia,” Holt Klinger said. “The dynamics can be tough as our parents often also have a hard time accepting help from ‘the kid’. Even as adults, we always want to please our parents and this need can sometimes prevent us from taking action as caregivers.”

Still, adult children often have help that spouses of those with dementia don’t.

“Although our lives as adult children who are caregivers for our parents can be jammed packed with our own children and careers, we often have more resources and help from our own spouses and siblings,” Holt Klinger said.

For both spouses and adult children of people living with dementia, recognizing they are experiencing stress and taking time to focus on their own wellbeing is crucial.

“Care partnering for someone living with dementia can be both demanding and rewarding. As loved ones progress into the middle stages of the disease, the job can truly become a 24/7 duty,” Holt Klinger states. “It’s crucial to pay attention to your own health first. It is too easy to ignore this advice—but it should be top on the minds of care partners.”