The Stigma of Dementia: Adding Insult to Injury

Living with dementia presents a series of losses to both the person with dementia and the people who love them. Fear of what the future may hold, uncertainty about how quickly the disease will progress, financial worries about where and how care will be provided all take a toll on families dealing with dementia. Unfortunately, our society unwittingly adds an additional burden – stigmatization.

Because dementia results in loss of memory, personality changes, and difficulty expressing oneself, our society as a whole struggles when interacting with people with dementia. Do we attempt to start a conversation? Do we speak directly to them and risk embarrassing ourselves as well as them? As good Southerners, do we take the family a casserole? By contrast, if someone we know has a heart attack, we know what to do. We rally behind the person and their family, prepare meals, help with transportation to doctors’ appointments, offer to mow the lawn. We ask them how they feel and acknowledge how scary the experience must have been. When a person is diagnosed with dementia, folks are not so quick to rally; not because they don’t care but because they just do not know what to do. Outside of our comfort zone, we tend to retreat and avoid.

Sometimes the family of the person with dementia unintentionally adds to the problem. Consider the once prominent businessman who now has difficulty remembering his wife’s name. His wife may isolate him in order to preserve appearances and prevent friends and former co-workers from “seeing him like this.” Friends quit calling, social outings diminish, church services are avoided, and now the husband and wife are both isolated. How very sad to carry that additional burden. How much kinder would it be for this couple to feel accepted and loved during this journey? Would they feel the need to hide if the husband had a heart attack? Of course not.

The fear of being stigmatized can also directly hinder diagnosis and treatment. If a family is embarrassed or unwilling to discuss early signs of dementia, they may avoid seeking medical advice. This could result in a missed diagnosis or no diagnosis at all. Without a diagnosis, no treatment can be given. The family could also be robbed of precious time needed to plan for the future and take advantage of the best quality of life while they are still able to do so. The stigma of dementia can also make developing a support system so much more difficult. If you feel you must keep the diagnosis a secret, how can you ask for or accept the help you need?

But what if we looked at this differently? What if we made a concerted effort to create a no-fail society for people with dementia? What if we could slow down enough to allow the person with dementia to express himself? What if we overlooked a napkin tucked under the chin rather than placed in the lap? What if we took a chance on an outing with an old friend and found out that that friend is still “in there.” There would be no more “dementia patient” but rather a “person with dementia.” Note: person before dementia.

What do people with dementia want you to know? According to the 2012 World Alzheimer Report conducted by Alzheimer’s Disease International, people with dementia want you to:

• Talk to them and treat them as equals. In the early stages, it is okay to talk with them about their dementia. After all, it is the elephant in the room.
• Ask how you can be helpful interacting with them. If they have difficulty finding the word they are looking for, do they want you to offer suggestions or do they prefer that you give them time to work out their thoughts? Are they comfortable in a crowded restaurant or would they prefer to spend time with you in a quieter spot?
• Acknowledge them. Do not talk over them or above them. Ignoring a person is offensive.
• Know that short-term memory is the problem. A person with dementia may not remember what they had for lunch but remember in great detail their childhood home. That is their new normal.
• Initiate contact with them. They may not be in a position to reach out to you, so it will take extra effort on your part to create opportunities for socialization. If they used to attend Rotary, offer transportation to the next club meeting. If they enjoy golf, ask them to join you for nine holes and enjoy that shared time. If they used to garden, take them with you to the farmer’s market on Saturday morning.
• Learn to meet them where they are. Dementia is a progressive disease, and their ability to remember, converse, and participate will change with time. But please do not let that stop you!
• Be flexible and remember that, as with all illnesses, some days are better than others. If an outing needs to be cancelled, make the effort to try again on a better day.

The full World Alzheimer Report 2012, “Overcoming the Stigma of Dementia” can be accessed at https://www.alz.co.uk/research/world-report-2012. Knowledge is power, so let’s try to learn all that we can to be kind, inclusive, supportive, and involved. As the number of people with dementia soars, it is only a matter of time until your need for this information hits home.

Barbara Garwood is the transitional care coordinator for Lutheran Services Carolinas. For more information about caregiving, please call Trinity at Home at 704-603-2776.