How to Talk to a Child or Grandchild about a Loved One’s Dementia

Q. My father, who has Alzheimer’s, is coming to stay with us for the holidays this year. My children, who are 7, 10, and 13, saw him last year, but his symptoms have gotten a lot more severe since then. We didn’t say anything then because we didn’t think they’d understand. Now, we feel like it is time to have a conversation with them about it. What are some tips when it comes to approaching this topic?

A. When a loved one has Alzheimer’s disease or another form of dementia, it affects the entire family, including children and grandchildren. It’s important to talk to children and grandchildren about what is happening, so they understand what to expect as their parent’s or grandparent’s disease progresses. How much and what kind of information you share depends on the child’s age and relationship to the person with dementia.

The first step is to decide when to have your initial conversation. For example, it’s probably best to have a conversation if the loved one’s behavior changes suddenly or if they call a child by another family member’s name. Even if you don’t notice those changes, don’t underestimate children; they can be very intuitive.

Children are “capable and deserving of conversations about hard topics, and these conversations are not easy to have,” says Dr. Paige Naylor, Ph.D., pediatric clinical neuropsychologist at Children’s Hospital Colorado. “It’s okay if the initial conversation does not seem to go well, or if kids don’t seem as engaged as parents expect. This may be because the information is developmentally too complicated for kids to understand, or that they are processing it. Hard topics are not typically resolved or totally addressed in one conversation, and the best thing we can do as parents is to be open to questions from our kids later on.”

How to Talk about Dementia with Children and Teens

By talking, sharing feelings, and maintaining connections, you can help your child or grandchild understand what is happening with their loved one. Here are some tips when talking about dementia with children and teens:

• Explain what dementia is and what they can expect: Explain as clearly and calmly as possible, at a level that the child or young person can understand. Try to get a sense of how much detail they can cope with.
• Be specific about what the difficulties are that they’re likely to see: With dementia, memory is the primary difficulty, but there are often other cognitive difficulties as well. Your loved one might say things that he or she wouldn’t typically say or use language they wouldn’t typically use. When people have difficulty remembering, they can get angry easily because they’re confused and scared. So those are some really overt things that a child may see.
• Talk about possible forgetfulness: Talk about the behavior of the person with dementia, for example, if they are forgetting where they are or not recognizing family members. Stick to specific examples about what to expect around their loved one with Alzheimer’s disease. For example, “Granddad has something called Alzheimer’s disease, which is causing changes in his brain. This means that he may have a hard time remembering things or finding the right word to say.”
• If the person with dementia is in the early stages of the disease, ask them if they would like to be included in the discussion. If they want to participate in the conversation, perhaps they can offer information and comfort to the child.
• For younger children, steer clear of describing your loved one as “sick.” Young children tend to associate the word “sick” with being contagious, similar to the kind of sickness they’d get at school and may not understand that they can’t catch Alzheimer’s from their family member.
• Offer little bits of information at a time, and guide the conversation toward what matters to them to help their understanding.
• Let them know that their feelings are normal, and that they can speak to you without being judged: Encourage the child or young person to ask any questions they have and let them know that they can always talk to you about it.
• Listen carefully to what they have to say: Try to imagine the situation from their point of view.
• Be honest: At some point while you’re talking, older kids (and teens) might go right for the question: is their loved one going to die from Alzheimer’s? It’s important to be honest here, explaining that you can’t predict exactly how their condition will progress. If you have had discussions about death and dying before, pick back up where you left off with those. If your teen knows that some diseases can run in families, they may ask you if Alzheimer’s does too. Explain that Alzheimer’s disease typically begins when people are older, and there are countless researchers looking for ways to treat and prevent it. You can also research answers together and help your kid digest whatever information you find (lest they turn to Google without you there to guide them).
• Talk about living well with dementia: Focus on the things that the person with dementia can still do, as well as those that are becoming more difficult.
• Try to be patient: You may need to repeat your explanations on different occasions, depending on the age and level of understanding of the child.
• Explain what everyone else is doing to help Grandpa: It’s important to talk about what the difficulties are, and how others will be helping. For example, ‘Grandma may be helping Grandpa more with things when we’re there this year.’ Sometimes there’s a caregiver coming in, so prepare the child that there would be someone there that they don’t know and that this person’s there to help that loved one.
• Children connect with the symptoms, not the disease. For example, they can relate to forgetting someone’s name or where the keys are, or to feeling a sudden change in emotion that they don’t know how to express. Explain the circumstance or behavior in a way that’s suitable for your child’s age and maturity. And remind them that the person’s behavior is not their fault — it’s a result of the dementia.
• Give the child or young person plenty of reassurance and hugs: Don’t be afraid to use humor, if it feels appropriate.
• Age-appropriate books can help foster conversations.
  • Weeds in Nana’s Garden by Kathryn Harrison (for children under age 7)
  • The Dementia Diaries: A Novel in Cartoons by Matthew Snyman (for children ages 7 and older)
• You may even want to help your child find a support group or online resources where they can connect with other children in a similar situation.

How Children Can Spend Quality Time with a Loved One Who Has Alzheimer’s

Your child might question whether he or she could continue to spend time with their grandparent with dementia. Of course! Encourage your child to spend time with their loved one. If there’s an activity they both enjoy, create opportunities for them to share it. It can be helpful for both your child and your loved one with dementia to express themselves through art — music, writing, drawing, or dancing. And artistic expression can bring up concerns or feelings you can talk about later.

Doing fun things together can help both the child and the person with Alzheimer’s. Here are some things they might do:

• Do simple arts and crafts.
• Look through photo albums.
• Read stories out loud.
• Play music or sing.
• Children, and people with dementia, may enjoy sensory processing tools such as fidget blankets or fiber-optic lamps. Using these tools can help create a connection between them.

For more tips on helping children and teens understand Alzheimer’s disease, visit the Alzheimer’s Association’s Kids and Teens page.

Medicaid Planning for Alzheimer’s and Other Types of Dementia

Alzheimer’s, along with other types of dementia, is the biggest health and social care challenge of our generation, and a diagnosis is life-changing. When it comes to planning for long-term care needs, it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning. Medicaid planning can be initiated by an adult child acting as agent under a properly drafted Power of Attorney, even if your loved one is already in a nursing home or receiving other long-term care.

Medicaid Asset Protection for a Loved One with Alzheimer’s

Do you have a loved one who is suffering from Alzheimer’s or any other type of dementia? Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. Please reach out to make an appointment when you’re ready:

Fairfax Alzheimer’s Planning: 703-691-1888
Fredericksburg Alzheimer’s Planning: 540-479-1435
Rockville Alzheimer’s Planning: 301-519-8041
DC Alzheimer’s Planning: 202-587-2797