Welcome to Alicia’s monthly advice column where she’ll provide tips on caring for a loved one with dementia. Alicia Seaver is the Director of Memory Care at Bridges® by EPOCH and is a certified memory impairment specialist. This month’s topic is conquering the dementia stigma.
As we get older, people may begin to view or treat us differently based on societal stereotypes. You know the ones — common stereotypes include the ideas that seniors are depressed and isolated, behind the times, stuck in their ways or are losing their memory. Unfortunately, one in ten seniors age 65 or older does have issues with their memory in the form of Alzheimer’s or another type of dementia, a condition that carries its own unique set of stereotypes and stigmas.
Not only do people often view memory loss as a normal part of aging — a formal diagnosis of Alzheimer’s or dementia is not a normal part of aging — they may also believe nothing can be done to help someone with dementia. For example, family and friends of a loved one living with dementia may focus more on the disease than the person, and may subconsciously use negative language when referencing their loved one’s disease. Luckily, if you’re a caregiver of someone living with dementia, you have a unique opportunity to help fight the stigma. This doesn’t mean you have to travel across the country giving speeches and lobbying lawmakers — you can educate others through small, personalized acts that don’t require a ton of extra time or effort on your part.
Speak about your loved one with respect and dignity. It’s easy to fall into the trap of speaking about your loved one in a way that others would — especially when your loved one is not around — but doing so only perpetuates the stigma. Look at social interactions as opportunities to educate others. Share your knowledge and experience with the disease when appropriate, such as when a family member or friend makes a joke about dementia or says something that isn’t true about the disease. People often make tactless remarks about dementia because it’s foreign and even somewhat scary to them. By talking openly and directly about dementia, you will help decrease their fear and increase their understanding.
Ask friends and family to educate themselves. Don’t be afraid to send friends and family links to articles and resources you’d like them to read. As a busy caregiver, it’s unreasonable to expect you’ll have time to educate others comprehensively on what your loved one is going through. The Alzheimer’s Association is a great starting point for anyone who wants to learn about dementia.
Encourage your loved one to stay active and engaged. When a person is diagnosed with dementia, they may feel ashamed, isolated and misunderstood by others. Unfortunately, hiding from the world will typically only exacerbate those feelings. Encourage your loved one to continue living their life and doing what they love. If activities they once enjoyed are now difficult for them to partake in, work with them to find new ways to participate or new activities to enjoy: art, music and exercise have all been shown to help ease the symptoms of dementia. Help your loved one connect with their community through volunteer work, support or social groups, and special events. And remind them that you’re in their life as more than a caregiver — you’re their friend, confidant and advocate.
Be an advocate. Standing up for your loved one and their disease doesn’t have to be a monumental task. Local communities nationwide hosts annual Walks to End Alzheimer’s, where you and your loved one can walk for a cure and walk to support others with Alzheimer’s and different forms of dementia. Joining an online message board or local support group for caregivers and their loved ones gives you the chance to share your own experience and insights with others who are traveling a similar journey. You could even start a blog to help support and educate others. If that seems too daunting, following and sharing posts from organizations like the Alzheimer’s Association and the Dementia Society of America on social media can be an easy way to reach your family and friends.
No matter what method you choose to help fight the stigma of dementia, know that you’re not only making a difference for your loved one, but for the more the 5 million Americans who are living with Alzheimer’s and other forms of dementia today.
