When an elder in the family has dementia: the impact on children

A couple of months ago, the daughter of a dementia patient told me she was worried about how her children would be affected on seeing a grandparent get angry and accusatory and throwing tantrums. And again, a few days ago, another woman described a scene where her son yelled back at a grandparent who had been yelling. “These are not the ‘values’ I want my son to imbibe,” she said.

I’ve been thinking about this quite a while, and I feel that, in all our caregiver talk and awareness drives, we don’t focus enough on the impact on young children – on what to explain to them, and how to help them cope and adjust. In this context, I chanced upon a very nice article where the author describes how she, as a child, felt about the secrecy around a grandparent’s dementia: Essay: Children need to be brought into the Alzheimer’s conversation.

So what happens in a family when a grandparent acts forgetful, asks questions repeatedly, or says something harsh to the grandchildren? Do the adults act matter-of-fact about it and say it is the nature of dementia, do they take pains to explain things to the child and suggest ways to communicate with the grandparent and cope with strange behavior, do they “protect” the child by pretending nothing is wrong with the grandparent, or do they try to reduce interactions between the child and the grandparent?

Every dementia patient behaves differently, and every family is different in terms of the challenges they face. Some patients say things that hurt – like telling a granddaughter that they had wanted a grandson instead, or berating a child for being dark-complexioned, or short, or fat, or thin, whatever. These are tricky situations to handle, and consoling the children gets tough. In some families, the children get irritated and snap at a grandparent who is forgetful or repetitive, a reaction which typically makes things worse and ends up in a free-for-all yelling match.

Additionally, if the child sees her mother upset or exhausted or complaining about a grandparent, the child is likely to resent the grandparent who “caused” it, and the child may then be rude to the grandparent with dementia. Or the child may withdraw or act belligerent and uncooperative. It is not easy for a child to see so much conflict and unpleasantness at home, especially if the child has no idea why it is happening, and who is “at fault” (we humans always find a way to make someone right and someone wrong, someone other than ourselves :) ). A child who perceives that there is a “battle” between her parents and a grandparent will be affected adversely, and find it more difficult to accept that the grandparent has dementia, let alone adjust to the challenging behavior. The child may be overwhelmed and throw a tantrum or start crying.

Such situations create a vicious cycle with everyone’s frustration feeding into each other. Every small incident makes things worse, creating a downward spiral that becomes very difficult to break out of, because the patient cannot break out of it (that’s the nature of dementia), and the overwhelmed caregiving family feels life is so unfair that every adjustment is viewed as a “defeat” or “surrender” and a “why should I make all the adjustments!”. The resultant tension makes it difficult to think of any creative solutions.

And, of course, the child is bewildered. Having no understanding as to why the grandparent is acting so weird, the child may arrive at her own explanations that are totally off-track and more alarming than what the reality is.

Yet, there are many families where a grandparent with dementia fits into “normal life”, and is accepted and treated affectionately in spite of the strange behavior, partly because everyone in the family understands the situation the patient is facing, and partly because family members manage to use gentle humor and love to adjust to what otherwise may have irritated.

Consider, for example, the common and relatively harmless tendency for repetition that most patients show. We don’t really have to get irritated when someone asks a question (for what seems like) a hundred times. We don’t have to see it as “unfair.” In some families the adult caregivers and the children manage to develop a calm way of responding to the repetitive behavior and intrusive questions.

It takes more than just remaining calm, of course. Creative solutions are needed.

A caregiver once shared how his son coped with a grandparent who would repeatedly ask the grandson whether he had eaten. The grandson would smile and tell the grandparent that yes, he had eaten, and show a spoon as proof (he carried a spoon in his pocket when at home :) ). Then he’d ask the grandparent whether she had eaten, and the grandparent would look content…till she asked the question again. Okay, so this approach may not work for everyone, but it shows that remaining calm and showing some creativity works sometimes, and is worth striving for. At least some of the problems may reduce this way.

Harsh words and accusations are more difficult to handle, but understanding that this is not a battle, and not someone being troublesome and unfair and mean can make it easier for the child to handle it. A statement that may seem cruel and unfair when viewed in one way, can seem the helpless ramble of a disoriented person when seen another way, and we can help children change the lens through which they view the grandparent. Also, most incidents have their triggers, and if children understand that, they can reduce the frequency of the problems.

Adults often underestimate the impact on children who see a grandparent deteriorate and become forgetful. Children may get unnerved when they see an elder lose their memories and act in strange ways. It makes the order of their world go topsy-turvy; after all, most children get a sense of stability and security in their lives by assuming that the adults will look after them. A child may have fond memories of a grandparent who is now unable to recognize them, is acting clumsy and out of control, and the experience could traumatize a child.

To me it seems that the best way forward is to talk openly to the children so that they are not frightened by what is happening. This means explaining things to the children, listening to their questions, resolving queries, sharing tips.

Children are more likely to understand, though, if other persons at home are also able to “walk the talk” in the way they respond to the person with dementia. The children need to not just hear words like “dementia” and “brain has shrunk” but believe that the behavior they are seeing is because of that, and that by talking to the grandparent in certain ways, the problems will reduce. We have to not just explain but convince and demonstrate to the children, and all this is very important because children have a right to this information–they are part of the family and are stakeholders.

Most of our awareness material and tips focus on making adults understand the problem and how to cope with it, but simple explanations suitable for younger people are available, too.

For example, Alzheimer’s Association (U.S.A.) has a section devoted to this at Just for Teens and Kids. The HBO’s Alzheimer’s Project has a number of videos where children talk of their experience in this section with Maria Shriver: Grandpa, Do You Know Who I Am?”.

I am not aware of any child-specific material created in India (where children usually see grandparents with dementia being treated as senile persons acting strangely). If any of you know of any such material, please leave the details in the comments below.

I must add that it is always gratifying to hear of situations where things work out and grandchildren are able to connect to a grandparent suffering from dementia. Such cases give hope. While there is no “one size fits all,” knowing of such successes encourages one to explore possibilities to make grandchildren connect to the grandparent with dementia.

In a recent comment I received on my website, Mahesh Kumar, whose mother has dementia, shares how his daughter began to accept her grandmother’s dementia after Mahesh talked about his mother to her and helped her appreciate her grandmother and connect to her, looking past the irritants caused by her grandmother’s forgetfulness and confusion. (Click here to read the comment which includes a note by the child) Thank you for sharing this, Mahesh.

If any of you know of tips to help children understand and adjust to a parent/ grandparent with dementia, please do share. Please talk of any experiences you have had about how your children have faced problems or have adapted to a person with dementia. Leave comments below, talk to each other, talk in support group meetings, blog about it, or use whatever modality suits you to spread the information.

It is by pooling our knowledge that we, as a community, move beyond the challenges and learn how to accept situations that seemed unbearable earlier. Over time, we even experience fulfillment and love. And that is nice :)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementia-care-notes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

8 Responses to When an elder in the family has dementia: the impact on children

  1. Rummuser says:

    Let me share the latest. My father wanted some special dishes prepared for him and I promptly arranged for them yesterday. He over ate. Not only the dishes that he wanted but also the ones prepared for me as I am a vegetarian. He suffered and this morning accused me of tempting and taunting him with an array of dishes. When I pointed out that he ate what he need not have, he got more furious! My son, burst out laughing when I told him the story and thanked Heavens that he had inherited a sense of humour to see the funny side of it. The grand son incidentally is 40!

  2. marilyn says:

    The reason I was looking for this information, is that a friend has been caring for her mother who lived with her for the past twenty years. Her children have grown up in the same house and for at least the past ten years, her mother has had dementia (severe) and the children who now range from 16-25 have suffered from living with the grandparent. The patient with dementia screams horrible names at everyone frequently, threatens and accuses everyone and paces throughout her home. She refuses to bathe and is incontinent. I do not think it was anticipated that she would live as long as she has, but I have felt that the kids are suffering the same effects as children of alcoholics. Anxiety, depression, and ODD to name a few symptoms. I have often wondered if sparing oneself the guilt of putting a parent with dementia in a nursing facility was worth sacrificing the rest of the family unit. Everyone in that family is suffereing on a daily basis and I don’t think they are aware of the long term effects and it has become normal to live with this extreme and constant distress. Just an observation from my friend’s situtation. I do feel sorry for the entire family. There is not much happiness and quite a bit of dysfunction. I just could not sacrifice my children or my marriage, since the dementia patient is not even aware of reality most of the time.

    • Thanks for sharing this, Marilyn. You have made a very valid point here. Yes, it is always difficult, whichever way one decides on the trade-off. It is far more difficult than it seems from the outside, because the adjustment required from everyone is ongoing, every minute of the day, even when other challenges that life presents are also overwhelming. While persons with dementia are actually far more aware of what is happening around them than is obvious to family, that does not always make it easy to help them or make their interactions easy to cope with. I’ve known persons who placed a parent with dementia in a home because there were young children in the house and handling the situation was making everyone unacceptably tense and stressed out. I’ve also known people who found workarounds, so I guess this is very, very individual because each situation is different, and the family is in the best position to decide. Definitely, one does not want the children to carry emotional scars from this period. There is also the aspect that not everyone has the option, even if they want to, to place the person in a suitable facility…

  3. Concerned parent/daughter says:

    I found this via an online search. My father was recently diagnosed with vascular dementia. The biggest issue with him is rage. He recently had to be forcibly hospitalized, but is back home now (and highly medicated). My concern is for my almost four year-old daughter. I am afraid of her being traumatized by seeing him lose it. I have witnessed it, and it terrified me. The last time she saw him was right before he had to be hospitalized, and we ended up rushing her out of the house for fear of what he would do/she would be exposed to. My mom is eager for things to get back to “normal” now and wants me to bring my daughter over. I don’t know how it is best to proceed. At this point, I really haven’t said anything to my daughter about the dementia. All she knows is that her grandfather was in the hospital…

    • This is so sad…

      I guess you will have to start telling your daughter something, perhaps in small doses, because she must anyway be sensing that something is wrong and that something is being hidden from her and her imagination about what that is may be frightening her anyway. It’s not easy to do but some of the links above may help. It needn’t be the whole detailed version, just things that will make your daughter feel less worried and more understanding about the situation. A few small facts at a time, then wait for that to sink in and for her to ask questions, then another small dose.

      I don’t think you can prevent exposure. Even if you hide your father from her, your daughter will see all of you rushing around, worried,and overhear tidbits that frighten and puzzle her.

      I’m not sure things will ever get “normal”, though, not the way your mother hopes for, and perhaps your mother will need as much hand-holding through this as your daughter.

      I wish you the very best for these hard times…
      Swapna

  4. Noline says:

    Our 5 year old son has adapted very well (better than us really) to my mother’s severe and rapidly progressing dementia, with simple explanations that “grandma’s brain is broken, just like when someone’s arm or leg is broken, except they can’t fix grandma’s brain.” We basically explained to him that grandma is now like a baby sister who needs his help, but she doesn’t know her brain is broken and it might upset her, so we don’t talk about it to her, we just help her. He plays with her, agrees with her when she makes no sense and if she gets upset, he doesn’t worry, he just tells mom. I try to redirect or distract her but stay close to him, letting him know that she just gets tired and cranky like babies do. It may seem a little insensitive to her condition, but it works perfectly for him. All of his questions can be answered in this context. We praise him for being such a wonderful help with grandma and he has adjusted incredibly well with patience and understanding. I hope this helps someone else.

    • Thank you for sharing this. That’s a very nice and simple way of explaining the situation to someone young, using an example they can easily relate to. We just have to choose something that is appropriate for the child being explained to, and I’m sure persons who are concerned that their children will be unable to adjust to a grandparent with dementia will find it useful.

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