Caring for a Spouse with Dementia or Alzheimer's

In Sickness and in Health

Couple Receiving News of Dementia
Couple Receiving News of Dementia/Troels Graugaard Collection: E+ /Getty Images.

"I, Sally, take you, Fred, to be my lawfully wedded husband, to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part."

For many, those vows that they took 50 years ago are in the forefront of their minds when they're determining how to care for their spouse or partner with Alzheimer's disease. But often, it's not an easy task.

Caring for a spouse or partner with Alzheimer's or another type of dementia can range from a minor bump in the road in the early stages to a monumental challenge in the middle and later stages.

How Dementia Challenges a Marriage

When Alzheimer's disease shows up, roles begin to change. What may have been a partnership  and life-long friendship may now resemble more of a parent-child role. One spouse becomes responsible for the other, worrying if he's simply late or has become lost on the way home.

In some relationships, the person with dementia accepts the guidance of his spouse and becomes willingly dependent on her for direction. In others, resentment and anger develop because she's "telling him what to do" all of the time.

Intimacy can change as well when dementia strikes a marriage, leaving the caregiver spouse unsure of what's appropriate and beneficial for them both. There can be challenges that involve increased or decreased interest in sexual interaction, and sometimes, inappropriate behaviors develop.

  

Dementia can also trigger some ethical questions about if it's appropriate for people with dementia to have sex. This is because in an established relationship, the point when someone with memory loss loses the ability to consent to sexual interaction is often difficult to determine. However, those concerned with ethics also want to protect the person's sexual rights for as long as possible since this can contribute to a meaningful and enjoyable relationship with their partner.

There are also physical effects from being a caregiver for someone with dementia, and those effects on spouses are specifically highlighted in the Alzheimer's Disease 2014 Facts and Figures report.

Sometimes, the most difficult aspects of caring for a spouse with dementia are the personality changes and challenging behaviors that can come with the disease. Your loved one may suddenly accuse you of being unfaithful for no reason or become aggressive and combative when you're trying to help.

Tips for Success

Remember: It's the Disease

One of the most important strategies for coping with these challenges is to constantly remind yourself that those difficult things are the disease manifesting itself, not your spouse. Those spiteful comments she now makes then become less hurtful because you know they're coming from her dementia, not her heart.

Sense of Humor

Research has shown that laughter can help the heart, mind, and body. Use it frequently. Clearly, you're not laughing at your loved one with dementia; instead, you might laugh together at the funny things that occur. Or, you might use a familiar phrase or previously shared joke to decrease the tension. Caregivers can also benefit from a bout of laughter with a good friend.

While it can be difficult to arrange to meet someone for coffee to chat, you and your loved one will both benefit if you get out once in a while. 

Continue to Strive for a Healthy Relationship

Sometimes, it's the little things. While you will have to accept that things are changing, you may still be able to build moments into the day where you nurture your marriage. Hold his hand, wink at her across the room, or share a chocolate milkshake together. Give her a kiss and tell her she's beautiful. If it's too hard to go out to his favorite restaurant on your anniversary, perhaps you can have it brought it you.

Don't Go It Alone

You may be strong, smart and an amazing spouse, but none of that means you should do this alone. Consider the professional resources in your community such as home health care agencies, the local or online support groups that may encourage you, the family members that may be able to give you a break once in a while, and the friends who ask how they can help (hint- take them up on their offers!).

Knowing when to get help with caregiving is important for both you and your spouse.

A Word from Verywell

It's very normal, and expected, for a couple to be challenged by the changes that dementia causes in a marriage. Knowing what to expect and being intentional with how you respond can ease this transition to some extent. It's also important to know that there is support available for both of you through community agencies and online groups. That encouragement can help you take a deep breath and refill your emotional bank of patience so that you can continue to love and cherish your spouse, despite these challenges.

Sources:

Alzheimer's Association. 2104 Alzheimer's Disease Facts and Figures.  http://alz.org/downloads/Facts_Figures_2014.pdf

Alzheimer's South Africa. Relationships.  http://www.alzheimers.org.za/index.php/relationships