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How do you tell children that mom or dad or a grandparent or your yourself have been diagnosed with dementia? It's always best to be honest, but to avoid too much information.

How do you tell children that mom or dad or a grandparent or your yourself have been diagnosed with dementia? It's always best to be honest, but to avoid too much information. Here are some key points.

Compare mental illness to physical illness

If you break an arm, you can't do everything you want to do. If you come down with pneumonia, you may have to go to the hospital for a long time. People who have dementia can't do all the things they want to do.

Have your talk about dementia in a loved on in a calm setting

The time to explain a mental health issue isn't just after the child has witnessed anger or shouting or violence, especially if that upsetting event involved your family member who is living with dementia. That's the time to reassure the child they will be OK. Discuss dementia in a calm setting when the child's stress levels are low. Pay attention to your child or teen's reaction to your discussion. Let them take the news in at their own pace. Slow down if they seem upset or confused. Pause to let them respond.

Maintain 'social reserve'

The medical literature has a concept of dementia known as social reserve — even people who have advanced dementia often make an effort to stay connected to the people they love. Before you talk with children and teens about a loved one who has dementia, do your best to remind that loved one that they need to stay connected with their children. In forms of dementia that cause apathy, this may be an impossible task. But in many forms of dementia, parents and grandparents continue to reach out to family even when verbal communication is difficult. Let them show love any way they can, under supervision.

Communicate with doing rather than just talking

Shared activities with the person who has dementia keep family ties real. Even as verbal skills decline, it may still be possible to enjoy a Sunday dinner or a holiday meal, to watch a sporting event, or to go through photo albums or scrapbooks. It's essential to keep these events low-stress. Neither children nor their elders with dementia are likely to react well to outbursts. But maintaining happy physical presence circumvents untimely questions.

Don't expect someone who has dementia to do dementia education

Just after a diagnosis of dementia, some people will still have the ability to hold a lucid conversation about their disease. They may want to initiate a conversation with their children or grandchildren to explain their condition in their own words. Allow them to speak without interrupting them. Let them speak from the heart. But don't expect someone who has dementia to be able to explain their disease on cue, or in a way that fits your preconceptions or agenda. Most of the hard questions about dementia have to be answered by someone who doesn't have it.

Different cultures focus on different aspects of dementia care. Americans tend to focus on the physical needs of people who have major neurocognitive disorders. They tend to pay more attention to walking, bathing, getting dressed, and feeding themselves. If you can still do those things, you aren't seen as sick. Chinese families, studies show, are more concerned about cognitive decline in dementia. Being able to dispense guidance is seen as more important than being able to perform the physical tasks of daily life. A study found that British families look for signs of continuing emotional connection with a family member who has dementia as an indicator of remaining health.

Remember that pre-school age children need assurance more than information

Children who are still in kindergarten or pre-K have limitations in their ability to understand dementia, but they have great need for emotional reassurance that they themselves are loved and will continue to be cared for. Whenever possible, it is best to shield young children from irrational outbursts and violent behavior. Children who come in on outbursts of anger or laughter or bizarre behavior wonder if they are the cause. It is best not to burden them with more information than they can process.

And don't forget that the older children get, the more specifics they need

By the time children are going to school, they have more questions and need more information. They usually will try to protect family and friends. Sometimes a school-aged child needs to understand why an adult is acting strangely. But sometimes that child will need to understand why other adults treat their loved one strangely. It's important to give school-age children accurate information, along with the same assurances that they will be OK despite the presence of dementia in their family.

Tackle difficult questions with teenagers

Teenagers are capable of asking emotionally and factually difficult questions. They also tend to have good lie detectors. You can't get away with sweeping the truth under the rug by the time a child becomes a teen. On the other hand, teens don't have a good framework for understanding mental illness. They may get misinformation from their peers or social media that can only be corrected with substantial knowledge. If you don't understand dementia, chances are your teen won't either.

So do your best to become informed about the causes, course, and outcome of your loved one's disease. This can be an extremely difficult task while you are also having to deal with huge medical expenses, mortgages, car payments, and hopes for putting your kids through school. But the effort you spend on explaining dementia to your children may prevent some "last straw" from crashing down on you. Enable your children to become your allies in living the best life you can.

  • Calia C, Johnson H, Cristea M. Cross-cultural representations of dementia: an exploratory study. J Glob Health. 2019 Jun.9(1):011001. doi: 10.7189/jogh.09.01101. PMID: 30997043.
  • Maki Y, Hattori H. Rehabilitative Support for Persons with Dementia and Their Families to Acquire Self-Management Attitude and Improve Social Cognition and Sense of Cognitive Empathy. Geriatrics (Basel). 2019 Feb 25. 4(1). pii: E26. doi: 10.3390/geriatrics4010026.PMID: 31023994.
  • Werner P, Shpigelman CN, Raviv Turgeman L. Family caregivers' and professionals' stigmatic experiences with persons with early-onset dementia: a qualitative study. Scand J Caring Sci. 2019 May 6. doi: 10.1111/scs.12704. [Epub ahead of print].PMID: 31058357.
  • Photo courtesy of SteadyHealth

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