Published on: June 30, 2020
by Women’s Brain Health Initiative:
Children are highly attuned to their environment and readily notice changes in those around them. If a family member has Alzheimer’s disease or other type of dementia, children, depending on their age and how often they see that person, will inevitably notice that something is different with their loved one. They may have questions about the changes in their family member, or they may be hesitant to voice their concerns, or perhaps not even know how to express themselves about the situation. While it is natural to want to protect children from difficult or upsetting situations, it is important to explain to children what to expect and how to react to their loved one’s cognitive decline.
Tips for a parent or caregiver on how to discuss dementia with a child
“One of the crucial things is you’ve got to be open. People often think that they should shield kids from bad news and not tell them. That’s always a mistake,” says Dr. Robert B. Santulli, an Honorary Associate Professor of Psychiatry at the Geisel School of Medicine, and a Visiting Associate Professor in the Department of Psychological and Brain Sciences, at Dartmouth College in Hanover, New Hampshire. He is also co-author of the book The Emotional Journey of the Alzheimer’s Family.
“Honesty is extremely important,” agrees Toby Haberkorn, author of When My Grammy Forgets, I Remember: A Child’s Perspective on Dementia, a book for children that stimulates discussion about compassion and dementia. “If you try to hide the fact that grandpa or grandma has dementia, children are going to know that something is wrong and for some reason it is too bad or too frightening to talk about,” says Dr. Santulli.
It is essential that parents take an active role and “control the narrative,” according to Haberkorn. With the Internet at their fingertips, children can search their own information, and some of what they find may not be accurate or will not be age appropriate.
How you explain the situation to your children will depend on their age, as well as their relationship to the loved one with dementia.
Although the language that you use or how much detail you go into will vary, it is important to explain that the child’s loved one is ill, says Dr. Santulli. This will help your child understand why the person may be behaving differently than usual or forgetting more often. Although the news may be distressing, children may find it a relief to know that their loved one’s behaviour is part of an illness and is not directed at them. This is particularly important with children, as they may attribute the behavioural changes to their own actions.
With teenagers, Dr. Santulli believes that parents should speak more openly and identify the disease as dementia. Having accurate, age-appropriate information can empower teenagers, says Haberkorn, and will position them as having a role in a “significant family situation.”
Parents can direct the conversation based on the particular questions that the child asks or how much information she or he seems interested in hearing about. Some questions that you could ask your child include “how do you feel about this?” or “grandma called you by somebody else’s name, why do you think that happened?”
Parents may be surprised by how children interpret the situation, and asking your children pointed questions will start an important dialogue on the subject.
Often, children may be fearful that because Alzheimer’s disease or other types of dementia are illnesses, they may develop the illness too or that their parents will. You can explain to the child that dementia is not contagious, like a cold or chicken pox, says Dr. Santulli. “Children need to be reassured that the family is okay, and that mommy and daddy are safe,” says Haberkorn. In other words, children need to understand that they will not develop the disease simply by being around their loved one. You can also explain to a concerned child that those who develop these brain diseases are typically older adults.
When they realize that a loved one is ill and that her or his behaviour has changed, children will likely experience a wide range of emotions, including uncertainty and fear. “Children are afraid because they just don’t understand it,” says Dr. Santulli, and explaining the disease will therefore be of great assistance. Children may also experience jealousy if their family member lives in the same house and is receiving additional attention from their parents, says Dr. Santulli. They may be sad that their relationship with their loved one is different now, particularly if they have been close over the years, and they may have to learn how to be more patient as well.
Once the child knows what is going on, Haberkorn suggests using a practice called “compassionate modeling,” where parents offer compassionate care to the loved one with dementia. “If we are compassionate toward the person with dementia, [children] will be compassionate,” which is a skill that a child can use beyond the family dynamic. It is critical to show and inform a confused child that the love we have for the person with dementia and the love that she or he has for us in return still exists, even if her or his behaviour has changed.
Children need to be reassured that love is unconditional, that the person with dementia is part of the family, and we as a family continue to love and care for each other, says Haberkorn. Embodying this love is the central theme of Haberkorn’s book.
Try to find ways to involve your children in providing care and stimulation for their loved one with dementia. This will help make the situation seem more normal for them and will prevent them from feeling excluded. It is important to show children that they can still interact with their loved one, and can engage in fun activities together, such as listening to music, working on a puzzle, colouring, singing songs, and reading stories – all of which can be positive, says Dr. Santulli.
Spending time together can be beneficial for both children and the loved one with dementia. However, do not give your children (particularly younger children) too much responsibility, or let caregiving tasks consume too much of their time. Make sure that your children have time for their own interests and needs, such as playing with friends, participating in extracurricular activities, or doing homework.
Considerations for Adult Children Coping with a Parent’s Young-Onset Dementia
Approximately 16,000 Canadians under the age of 65 are living with young-onset dementia. According to the Alzheimer Society of Canada, young-onset dementia accounts for an estimated 2% to 8% of all dementia cases. A dementia diagnosis is difficult at any age, and comes with unique challenges – for both the person diagnosed and her or his loved ones – when an individual is diagnosed in her or his 40s or 50s.
A paper published in a special issue of International Psychogeriatrics in December 2014 reported that adult children (between the ages of 20 and 37) of a parent with young-onset dementia experienced great burdens and feelings of neglect during the development of their parents’ dementia, both by their family and by health and social services. Stress was increased within the family, and depending on sibling dynamics and positionality (i.e. gender, age, and relationship to parents), reactions to the circumstances varied. However, in all of the interviews conducted, adult children expressed a great need for information and support.
As Dr. Santulli observes, young-onset dementia can be particularly complex and challenging because “the parent who is the care provider now is the person who needs care,” and he has witnessed individuals in their teenage years have to cope with this situation. An adult child’s feelings in these circumstances can be an intense combination of sadness, anger, confusion, and fear. Professional counselling is often extremely valuable as a way to understand and cope.
Another paper published in the same issue found that adolescent children (between the ages of 15 and 27) living with a parent with young-onset dementia had difficulties managing all of the responsibilities and showed concerns about their future.
Although most adult children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behaviour of their parent.
The children felt more comfortable speaking with someone who was familiar with their situation, and who had specific knowledge of young-onset dementia and the services available. These findings reinforce the need for a personal, family-centered approach to young-onset dementia, as well as the demand for more accessible and specific information about the diagnosis and development of the disease.
Additionally, a 2015 study published in Journal of Multidisciplinary Healthcare found that growing up with a parent with young-onset dementia has a great impact on the child’s situation and experiences of personal development. The researchers concluded that children of a parent with young-onset dementia are a group with unmet needs for support. It is critical for children of all ages to receive support, as well as access to information on the course, treatment, and management of the disease, when a loved one is diagnosed with dementia. Fortunately, there are now more resources and support systems available, including The Change Foundation and Carers Canada.
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