Who is suffering when a loved one has dementia?

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A perspective about dementia-related suffering, from someone who interacts daily with those in memory care

I have the honor of talking with many different friends and family of people who have some form of dementia. Obviously many of these friends and family have pain surrounding their loved one’s condition. There is fear about what is happening and what may happen. There is sometimes confusion about the actions of their loved one and symptoms of the dementia. There is also often joy as they see their loved one living a fulfilling life with dementia. Everyone one is different and as with many things in life things are not always just black and white. There can be sadness and joy and other feelings all muddled together.

How family and friends may view dementia and suffering

Some people see their loved one as suffering. I hear that especially from spouses. Husbands and wives perceive their loved one as suffering. Often, my perception and the perception of the people at Emerald Crest is not the same.

Certainly, there are people who do struggle greatly with their dementia. At Emerald Crest, I think I see this most often when a person first moves in. Some of our new residents struggle at first. Sometimes very new people in our higher cognitive functioning houses do not think that they are in the right place. I have heard many times from new people that, "no offense, this is a very nice place for people who need it, but I am not one of those people". By the time I see many of these people the next week they are quite happy in their new surroundings.

An example of a new memory care resident

Sometimes a new resident is not able to express so clearly why they aren’t happy with where they are, but they do show it. I readily think of a woman who moved in to one of our middle stage houses. I think I saw her on her first full day. She was very upset and angry. She couldn’t tell me exactly why. I would guess she was just overwhelmed by the change. Everyone and everything new can be a lot. When I saw her the following week, it was like speaking with a different person. She was so friendly and happy, and happily showed me around her new home with all her new friends.

People who see their loved ones as suffering, though, are not talking about a rough day or week even. They see the dementia itself as suffering and their loved in perpetual suffering. Rarely, do I see that the same way and I think rarely does our staff see that either.

How memories of loved ones affect our perceptions

It seems to me that often times it is the family members themselves who are suffering with the dementia, not the person who has the dementia. People watch their loved one change. People with dementia often lose their independence. They lose concrete memories of things that are near and dear to them. Their perception of the present and past is often distorted. Things that were once pleasurable may not be pleasurable to them anymore. This is seen as suffering. I would not say this is necessarily suffering.

But to watch someone you know and love change in these ways can be suffering. Especially for someone who has built a life with this person, like a husband or a wife. The husband or wife may be suffering with the changes and losses, but instead of seeing that suffering as their own they put it on the person with dementia. After all, how can I be suffering with dementia if I don’t have it?

Nothing is nefarious about it. No ill will or deceit. Just pain and loss coming out sideways.

I think sometimes people think about how they would feel if they lived with dementia or what their loved one would have said years ago without taking into account that age and dementia changes a person’s perspective on their life. A thought such as: my husband used to love to watch football but now he isn’t able to do that anymore so he must be suffering. Or my wife loved to have great long conversations but now she can’t do that so she must be suffering.

When we lose someone who has lived with dementia

The differences in perspective of our residents’ lives often comes out most distinctly when one of them dies. The full-time direct care staff really grieve these deaths. For families who see the dementia as suffering, they often see death as a merciful release. But for the direct care staff, much of their purpose is tied into caring for this person who has died. They spent hours with this person every week. They so often really care and enjoy the people they care for. For the staff, death is often a tragedy and happened too soon. For me, I think, it’s usually somewhere in between.

I would say that most of our people at Emerald Crest are happy and content most of the time. They are, overall, satisfied with how their lives are now. At a support group meeting the other night, we were talking about a couple of our residents who have ups and downs in their days. We laughed as we talked about what perspectives people might have on our lives if were observed 24 hours a day and our moods and behaviors discussed!

Late-stage dementia and views on pain and suffering

For some people whose dementia has progressed to the point that they live in one of our late-stage houses, it can be difficult to know for sure how they feel. This is also not clear suffering. There are no signs of pain; physical, emotional, or otherwise. But to see someone you love in this condition does hurt. As one man told about his wife, “she’s not there anymore.” To talk about the different perspectives staff can have, this woman is one of my favorites to be with. I thoroughly enjoy her so much of the time. He still loves her and visits her regularly but there is little joy in his time with her.

Occasionally there are residents for whom their present life is very hard. These people often have pain from their past that can continue to haunt them and likely would whether or not they had dementia. Also, rarely, there are people for whom the symptoms of their dementia are distressing to them much of the time. But these people are exceptions and not what I am writing about here.

When I do talk with people who hurt for their loved one and see them as doing poorly, I don’t argue about that. I do let them know how much I or other staff appreciate these people. I know it to be true and I let them know. Often people like this enjoy reminiscing about those aspects of that person’s life that they miss.
Dementia is awful. It is often worse, it seems, for those who don’t have it.

Reverend Arlen Solem

Chaplain and Campus Pastor

In gratitude, thank you so much to all of our volunteers and donors who make all of the work we do at Cassia possible. Your contributions are greatly appreciated and needed to ensure we are able to fulfill our mission.

For questions about our spiritual care program, or if you would like spiritual care and support for you or your loved one, contact Chaplain Arlen Solem at 612-263-0503. or Arlen.Solem@cassialife.org.

At Emerald Crest, we offer a deep knowledge of memory care in a specialized assisted living setting for seniors with Alzheimer’s and dementia-related conditions. We encourage you to contact us directly with any questions or request a tour. For tours and general information, please contact Elizabeth Wendel at 952-908-2215.

Emerald Crest by Cassia provides memory care in a unique environment, specifically designed to support those with cognitive issues. Utilizing this exceptional model of care, individuals with dementia, Alzheimer’s and related conditions can flourish in positive relationships and participation in meaningful activities. Memory care is offered in the Minneapolis – Saint Paul area with communities in four convenient locations: Shakopee, Burnsville, Minnetonka and Victoria, MN.