The recent PBS documentary, Alzheimer’s: Every Minute Counts, sounded an alarm and a wakeup call to the devastation being caused by dementia, including Alzheimer’s. As more and more people become impacted, it’s important to help family members, including children and the community-at-large, understand the disease so everyone knows how they can help. 

Don’t Hide the Disease: Tell Extended Family Members and Children

Family members may already have their suspicions, so it is best to tell them in your own way when you are comfortable. Educate family members about the disease by referring them to helpful websites. Share articles and other information.

Help your family understand that a person in the early stages of dementia can still understand and do things. Help family members understand both the limits and the extent of the person’s capabilities.

Help children understand by answering their questions honestly. Know that their reactions will differ based on age. Younger children may somehow blame themselves for the disease and be sad and angry. Comfort them and assure them that’s not the case.

Communicate with children’s teachers so they are aware and can be on the lookout for any signs of concern. Teenagers may be embarrassed and not want to be around a loved one. Don’t force them.

Don’t Avoid the Dementia Diagnosis: Interact and Communicate with a Loved One

Give family members tips about how to address the person such as letting her or him know your name and how you are related. Don’t take it personally if someone does not recognize you.

As people go in and out of the disease in the early stages, it is important to accept and respond to them in the reality they are experiencing. Do not correct them and when necessary, divert the conversation.

Visit when they are at their best. Don’t speak to the person in a loud voice or as if he or she were a child. And respect personal space.

Help the Person Stay Active and Plan Activities

Staying active is extremely important for someone with dementia. Choose activities that match a person’s abilities, are fun, and involve the family. The important thing is to make the person feel included and feel good about participating. And sometimes participation may mean watching.

Helping with household chores can be an activity. Cooking and baking can be activities as well to an extent. A loved one may be able to help you measure and prepare a recipe but it may not be safe to be around a stove or oven.

Exercise, playing music, reminiscing and gardening can all be useful and therapeutic. Children can do arts and crafts with a loved one. They can look through photo albums and read stories to a loved one.

Go Out in Public but Plan Well

Going out in public means planning ahead.
When eating out, the National Institute on Aging recommends picking a restaurant that the person knows well. Consider the layout, the noise level, waiting times and staff courtesy.

Traveling overnight can be a challenge. Clear it with your loved one’s physician. Have all of the health information and medications ready. Make sure your loved one has identification with them in case they wander. Plan lots of time to complete activities, do not cram too much in and rest often.

Some caregivers carry a business-size card that they can give to a server at a restaurant for example. Huntersville CAREs, my local community’s dementia friendly initiative, has produced cards that people can hand out. The cards explain that the person has Alzheimer’s and may say or do things that are unexpected.

Ideally, local dementia friendly communities should start to educate police and fire departments and retail businesses so that one day cards like this are obsolete.

Has someone you know had to deal with a dementia diagnosis? When a loved one was newly diagnosed with dementia, what did you do and what did you learn? What have you found most helpful? Please share your thoughts and suggestions with us.