We know what stigma means and how damaging it can be. The definition of stigma is: “a mark of disgrace associated with a particular circumstance, quality, or person.” The concept of stigma for people with Alzheimer’s is getting a lot of attention. Since dementia is often seen as a dark and painful decline for a patient and their family, shame, embarrassment and fear are common responses associated with this disease. Fortunately, more and more prominent people are disclosing that they have Alzheimer’s and sharing their experience with the lighter, positive and “human” aspects of the disease. This development is paving the way for a better and more accepting and nuanced view of this devastating disease.
What is it Like to Deal with the Reality of Alzheimer’s?
Observation and self-report can tell us quite a bit about what it is like to live with Alzheimer’s or another form of dementia. More and more people are sharing their stories after diagnosis which gives insight into this illness. Speaking openly about the experience of the disease helps overcome a negative stigma. Here are some of the experiences that people with dementia have reported:
“My abilities to be able to cook are steadily diminishing…I am losing my ability to sequence, plan, prepare and cook. I hate packing – I pick up one thing, put it down, look for another thing, look for the first thing you put down and it’s not there. You end up not knowing where anything is. You try to be logical, but you cannot be logical when you’ve got Alzheimer’s.”
“They talk about the losses you get with dementia, and yes there have been many losses, but not so with my hearing. My hearing has been heightened, almost painfully. I can be out having a meal and the noise gets louder – it’s just like a crescendo, it’s terrible. I can’t stand it and I just want to finish the meal and get away.”
“I seem to live in a state of constant anxiety, of not being able to cope with crossing the road, going shopping, having a shower. The day-to-day things have been more and more stressful and causing me panics. What does it feel like when I know that the slow progression is creeping in and getting more and more frequent? Frightening. Scary. I doubt myself.”
For a person with dementia, there can be a loss of independence and productivity. As a society, we place great emphasis on what people can do. For people living with dementia, many simply can’t do what they used to. They lose the ability to work or assume their place as head of the family.
Stigma also creates a challenging barrier to maintaining relationships. Imagine feeling uncomfortable and anxious with family and friends. Or not being able to engage in activities that require a certain level of cognitive functioning. Some relationships that take a lifetime to build can easily fray and disintegrate. It takes a concerted effort from everyone to keep these important connections intact while dealing with cognitive decline. Otherwise, isolation and loneliness can take over.
How Are People with Dementia Affected by Social Stigma?
Why is it that people with dementia suffer stigma at such a disproportionate rate compared to other diseases? One answer may be that unlike other conditions, dementia has no cure. And the behaviors associated with dementia are uncomfortable and embarrassing to see and live with. These include:
Memory problems. In more severe cases, not recognizing family members or friends.
Outbursts of agitation or anger.
Inability to engage in normal self-care activities like bathing, cooking and driving.
In some cases, paranoia, delusions and hallucinations.
Earlier than expected disability and death.
No wonder people struggle with this disease. We can’t know what goes on in the mind of someone with dementia, but we do know that people with this disease can become ostracized or isolated. This is not healthy for the person or their caregiver. Let’s take a closer look at how social stigma often affects those living with the disease and their caregivers. Negative attitudes surrounding dementia or Alzheimer’s can lead to a patient:
Not Seeking Treatment. It is not uncommon for people who suspect that they have dementia to delay diagnosis and treatment. Although there is no cure for dementia, there are many interventions that can have a positive effect on the disease. Denial about dementia is counterproductive and even harmful. With a definitive diagnosis, it is easier to plan for the future and find community supports. Gently encourage your loved one to see a doctor if you think you notice early signs of Alzheimer’s.
Isolating Themselves. A person with dementia can experience disqualification from full social acceptance. Every person is unique and has the potential to do many of the things they used to do. Stigma contributes to assumptions that devalue a person with dementia. This deprives someone of being a contributing and valuable participant in relationships. There are plenty of fun activities for those with Alzheimer’s, so make sure to engage with your loved one regularly.
Feeling Ashamed. When someone with dementia is stigmatized, they may not even know why! The shame that comes from not fitting in can have long-lasting negative consequences. As a caregiver, be supportive and honest in dealing with these situations. Let your family member know that it isn’t their fault. Sometimes people are just inconsiderate because they don’t know how to react.
Tips on Overcoming Embarrassment About Alzheimer’s
A proactive and positive approach will help, though it may look different depending on what stage of the disease your loved one is in. No matter what, every person has value for what they have accomplished and what they are capable of in the present. You can support your loved one with Alzheimer’s and help them overcome embarrassment about the disease. Start with the following tips:
If possible, seek a definitive diagnosis with prognosis. A good evaluation may take some time and should include neuropsychological testing and brain imaging. Knowing what to expect can help you plan for the future and helps your family member become accustomed to the diagnosis. As part of this evaluation, the team can also provide your loved one with strategies and activities tailored to their stage of the disease.
Action Step: Look in your community for a physician or clinic that specializes in the diagnosis and treatment of dementia. Depending on where you live, options may be limited. Call the Alzheimer’s Association to get advice on where to turn.
Be open and honest. Tell family and friends about a diagnosis of Alzheimer’s. Encourage people to become educated about the disease. This will help reduce possible stigma that your loved one may experience with others.
Action Step: Look online for reliable information about Alzheimer’s disease and other related dementias. The Alzheimer’s Association is a great place to start. Refer family members to the site so that they can become educated about the disease.
Join an Alzheimer’s support group. Having the support and ideas shared by others can be invaluable. Many of these caregiver support groups have concurrent groups for the family member that has dementia. This helps them feel included and engaged.
Action Step: Again, the Alzheimer’s Association will have a list of support groups in your area. If this isn’t possible, consider hiring a caregiver to accompany your family member to the senior center. A good caregiver can find appropriate activities for your loved one to participate in. They can also smooth over any awkward moments with other participants. If none of these is possible, caregiver blogs abound on the web where families, caregivers, and those with dementia share their stories and strategies.
Be inclusive. Invite family members to social engagements with your loved one and make sure they know they should continue to invite you both to events. Coach them about how best to communicate to reduce anxiety and make the experience enjoyable for everyone.
Action Step: Let people know in advance if you plan on bringing your family member with dementia to a social gathering. If things don’t go well, be prepared to cut things short. Some situations will go well and others may not. That’s ok. Be flexible. Don’t force the issue if anyone is visibly uncomfortable. Your mission is to do what is necessary to avoid embarrassment.
Humor can help. Finding humor in situations can help you and the person you are caring for. Not to laugh at the person or minimize the seriousness of the disease but to lighten the mood! Humor can also diffuse those awkward social situations.
Action Step: Alzheimer’s patients may have a heightened sensitivity to jokes. Be mindful of how you use humor. Some people may have trouble understanding a joke or a playful put-down. A person with Alzheimer’s may find this kind of humor humiliating or stigmatizing. That being said, many people retain their ability to appreciate humor. Find the sweet spot that works best for you and your loved one.
Taking a proactive approach to a diagnosis of Alzheimer’s disease will build confidence. Have your loved one share their story with friends and family early in the process to build a team of advocates and confidants. The more your loved one is included in activities and social situations, the less likely they are to experience stigma. Don’t hesitate to let other people know if you notice that their actions are causing embarrassment or that their comments are insensitive. It is most likely completely unintentional. A little education will go a long way towards making everyone more comfortable.
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