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Love and Dementia: How to Support a Couple Coping With Memory Loss

Written by OurParents Staff
 about the author
4 minute readLast updated April 20, 2023

A dementia diagnosis affects everyone; from the individual diagnosed, to their family and friends. But, it can particularly take a toll on a spouse, making it difficult to strengthen a relationship already going through so much change. Fortunately, there are things you can do to support a couple that’s coping with memory loss.

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A spousal caregiver's experience with dementia

Gilva Kaufmann has been married to her husband, George, for decades. But, in many ways, George isn’t the same person she said “I do” to all those years ago. In 2001, George was diagnosed with dementia and then with Alzheimer’s disease a few years later.
“He’s here, but he’s not here,” Gilva says. “His doctor said he’s terminal… I can’t believe the doctor. It’s so painful.”
Couples like the Kaufmanns face immense changes and challenges when one partner develops dementia. Many have been together for decades, and their relationships have weathered the ups and downs of life. But as they grow older, dementia begins to chip away at the very things their relationship has been based upon.
Because dementia affects each individual differently, it’s impossible to make assumptions or generalities. From beginning to end, a couple’s journey with dementia is completely unique to them and constantly changing. Every couple will navigate dementia — and the evolution of their relationship — in their own way.

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Common challenges couples with dementia face

However, there are certain issues that commonly arise when one partner in a relationship has dementia. For the healthy spouses, and those who know and love the couple, being aware of these challenges is the first step in overcoming them.

1. More responsibilities

As the partner with dementia declines, their spouse begins taking on extra responsibilities.
How you can help: Encourage the healthy spouse to receive ongoing support where they’re most comfortable, whether that means leaning on family members, turning to a church community, or bringing in professional help. In order for a couple to maintain a relationship when dealing with the effects of dementia, some find it helpful to hire in-home care or move into an assisted living community, rather than have the unaffected partner become the sole nurse, housekeeper, and personal caregiver.
For Gilva, the support she and George receive is invaluable. The couple enjoys regular visits from a nurse and social worker, as well as a music therapist and rabbi. Their friends and family also help out around the Kaufmann’s home and provide companionship for George and Gilva.
“Some friends of mine come here to help,” Gilva explains. “My sister from Brazil called me the other day and talked to George. It meant a lot.”

2. Potential decline in health for the spousal caregiver

The stress and demands of daily care can lead to caregiver burnout and negatively impact their physical and mental health.
How You Can Help: Remind the caregiver you’re concerned about them not putting their own needs first sometimes. Offer to step in to provide respite care when you can. Caring for someone with dementia can be all-consuming, and many caregivers see their health suffer as a result. Offer to stop by and spend time with their loved one once or twice a week so they can take a break and attend to their own needs. During this time, the caregiver could run errands, go to appointments, attend a support group, or do something enjoyable like see a movie. As Gilva notes, it’s important for family caregivers to mind their own health and happiness if they hope to be effective in caring for their partners.
“I take care of myself a lot because [George] needs me,” Gilva explains. “He always took care of me and now I take care of him… The other day, I said goodnight to him and he [grabbed] my arm and said, ‘We stick together.’ ”

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3. Potential Personality Changes

When one partner experiences personality changes, loses confidence in their abilities, or acts unpredictably as a result of dementia, both partners often start to withdraw from others.
How You Can Help: Stay engaged and keep the couple involved as a part of your social group. Invite them to spend time with you and to mix with others just as you have in the past. Maintaining your relationship may require extra effort, but a commitment to connecting in any way you can will help provide a sense of stability at an uncertain time. Lend a listening ear and share resources for support when it makes sense. Most of all, when you interact, remember to help the couple stay positive.
As Gilva puts it, one of the best ways to cope with a dementia diagnosis is to simply “enjoy each moment.” She often shows George pictures and talks with him about memories they’ve shared.
“I remember the best times we had together,” she says.
For a couple affected by dementia, small actions from family and friends can have a big impact. Simple acts of kindness like providing respite for the caregiver and helping the couple look on the bright side can make all the difference.


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OurParents Staff

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