Understanding Alzheimer's disease and related dementias 0
Dementia doesn't just affect individuals. It is a disease that impacts families, communities and entire nations. For individual families, the illness can be a burden financially, emotionally and psychologically. Children are not immune to the effects of this illness.
When a loved one has Alzheimer's disease, children and teens may feel frightened and confused. Imagine being a child or teen struggling to understand why grandma or even mom or dad is acting so strangely or can't remember who they are.
Most children and teens are amazingly resilient and should be given an opportunity to understand what is happening and how they can help.
Here are some suggestions from the Alzheimer Society of Canada and author Deanna Lueckenotte (Alzheimer Days Gone By):
1. Be honest. Explain what Alzheimer's disease is. Contact your local Alzheimer Society for age appropriate resources. It is important for children and teens to understand that Alzheimer's disease and other related dementia's are illnesses and that grandma has a sick brain and that it's their sick brain that is making them behave differently.
2. Be open. Encourage everyone to talk openly about what changes they are seeing and how they are feeling. In the early stages of the illness, grandma or grandpa should be included in the discussion while they can still express their feelings. It is also very important for children and teens to know that they can speak openly about how they are feeling. Family members can also encourage them to talk to their teachers or someone at the Alzheimer Society or another adult whom they can confide in.
3. Let children/teens know that they aren't to blame. This is important for everyone to realize that when someone with Alzheimer's disease yells at them, accuses them of stealing or says something hurtful or inappropriate, that it is likely the effects of the illness and that it's the disease talking and not their grandparent. Encourage discussion about what happened. Point out that the person with the illness will forget things and this may be very scary which makes them upset.
4. Go with the flow. If grandma or grandpa likes to tell stories, if they think they are at the family farm when indeed they haven't lived there for 20 years, or think that it's May when if fact it's August, encourage everyone to just accept what is being said. Listen and play along. Explain that trying to correct grandma or grandpa will only cause them to be more confused and upset.
5. Include children/teens in the routine. Routine becomes very important for people with dementia and family members can help by having certain routines that they do with grandma or grandpa: such as sharing a story everyday at a specific time, playing a game, going for a walk, setting the table, talking on the phone, or looking through photo albums on a daily basis.
It is important for children and teens to realize that people with Alzheimer's disease are going through an illness that can be very scary for them too, and that they need the love and patience that a family can provide.
Giving grandma a hug or holding grandpa's hand are great ways to reassure them that they are loved and safe.
The Alzheimer Society has numerous free resources for children, teens and adults that maybe helpful in trying to understand and manage Alzheimer's disease.
If you have any questions or concerns about Alzheimer's disease or a related dementia, please contact the Alzheimer Society at 613-332-4614.