In over a decade of working with people living with Alzheimer's disease and related forms of dementia and their caregivers, I have learned much from these remarkable individuals. I have found the following 10 tips to be helpful for family and friends when someone they know has dementia.
1. Don't disappear. Families affected by dementia have told me again and again how their world shrinks after a diagnosis and as symptoms progress. Too often, friends stop calling just when they are needed the most. Continue to let the individual and their caregivers know that you are there for them!
2. Ask how you can help. Individuals with dementia lose their ability to perform many tasks such as driving, cooking and managing finances. Primary caregivers often report feeling overwhelmed by having to assume a second set of responsibilities. Offer to pick up groceries, drop off a meal, or sit with the person with dementia to give the caregiver some time off.
3. Resist the urge to correct the person with dementia. Individuals with dementia often have a faulty recollection of information. Unless it affects their health or safety, resist the urge to correct them. The person may react to being corrected with embarrassment, disbelief or anger. In most cases, it is not worth the upset.
4. Limit your use of questions. Questions can feel daunting to a person whose memory is failing them. Avoid asking things like "what did you do today?" These draw attention to the person's memory deficits and can lead to feelings of frustration. Instead focus on creating a positive interaction in the here and now.
5. Avoid arguments. Don't try to win an argument with a person with dementia. As their grasp of logic diminishes, their ability to have a reasoned discussion does as well. Negative feelings from an argument often last much longer than one's recollection of the points you have made. Remember, it is more important to have a positive relationship than to be right!
6. Help the person save face. I once had the opportunity to observe a woman with dementia and her adult daughter at a funeral. As each person arrived, the daughter subtly cued her mother with statements like, "Look Mom, cousin Tommy is here." This allowed the woman with dementia to appear to remember the person's name, responding "Hello Tommy, it's so good to see you." The daughter's cues were a wonderful gift to her mother, helping her to avoid the stress and potential embarrassment of forgetting key names.
7. Simplify activities. Juggling multiple sensory inputs, crowded environments, or multi-step tasks can be overwhelming to a person with dementia. Consider ways that you can simplify activities to give the person greater opportunity for a successful experience.
8. Don't forget the caregiver! Primary caregivers of people with dementia are at greater risk for burnout, depression, and adverse health events than the general population. Consider what you can do to alleviate the stress on the caregiver, or just give him or her an opportunity to share feelings about their caregiving role.
9. Address your own feelings! Watching a friend or relative experience the cognitive changes of dementia can raise feelings of fear, sadness and loss. Consider sharing your feelings with a friend, relative, or joining a support group.
10. Reach out for help. Don't go it alone! Local and national organizations exist to help families affect by Alzheimer's disease and related forms of dementia. Consider reaching out to the Alzheimer's Association at 1-800-272-3900 and/or the Alzheimer's Foundation at 1-866-232-8484 to learn more about resources in your community.
For those residing on Long Island in the Plainview Old Bethpage area, the team at the Mid-Island Y JCC can help you through the challenges of having a friend or relative with dementia. Their Alzheimer's Day Program offers supervised activities for those with dementia 5 days/week. Caregiver support groups are available. The JCC's Neighborhood Naturally Occurring Retirement Community Programs -- POB Cares and Project PACE - offer additional supportive services for Plainview Old Bethpage residents. Please reach out by calling (516) 822-3535.
Living with dementia poses many challenges for the individual, their family members, and friends. Remembering these key tips can help to make day-to-day life a little easier.