Debunking myths about dementia
Posted on 06/30/2021 by Fallon Health
Written by Heather Dubert, MSW, LICSW, CDP
When the topic of dementia is brought up, people often feel uncomfortable, upset, and afraid. Some speak of it in a low tone, and also quietly speak of a shameful secret. Some don’t want to talk about it at all. Or they may refuse to acknowledge that it might affect them or someone they care about.
Some of these feelings reflect the way dementia is seen in the broader culture. A study was published in Geriatric BMC In November 2020, they analyzed how movies, television, books, news, social media, and language portray disease. The study found that “the emotions commonly associated with dementia are fear, shame, pity and guilt, and the images often lead to a feeling of social distance.”
To reduce fear, stereotypes, shame and stigma, we need to talk about dementia more openly, despite the sensitivity and difficulty of doing so. Then we can begin to clarify frequently misunderstood aspects of dementia and debunk the myths that surround it.
While everyone with dementia has a unique experience, I hear some myths repeated over and over as I work with family caregivers and loved ones in my role as a memory specialist. Here are some of the most common ones — and the truth behind them.
Myth: If someone develops symptoms of dementia, family members need to make a decision right away
Fact: People living with cognitive changes should actively participate in decisions about their lives, for as long as possible.
It is important for a person to have a sense of independence, even when they are experiencing dementia-related changes. If your loved one is in the early stages of dementia and has only mild symptoms, now is the time to start talking about their wishes for future care and lifestyle. You can provide support and guidance, while at the same time encouraging your loved one to actively participate in making daily choices and planning for a future that is likely to include more advanced cognitive decline.
Although you may provide limited assistance as a care partner at the moment, your loved one will likely need more care in the future. Formalizing caregiving arrangements with the appropriate legal documentation can help protect you and your loved one, as well as other family members.
In the middle and late stages of the disease, your loved one will need more comprehensive support from a caregiver, rather than a care partner. Although a person with dementia may still be involved in their own care in some ways, the caregiver takes the lead. Changes in the person’s judgment and behavior will require more supervision and support from the caregiver.
Myth: Family members should take out the car keys at the first sign of dementia
Fact: A person with memory problems may be able to continue many daily activities – including driving safely.
While a person with mild memory loss or dementia may not be able to remember names and appointments, they may still be able to be successful in related activities, such as driving a car, at least for a while. Be aware of the signs that it is time to stop driving. Monitor your driving skills frequently to ensure the safety of your loved one – and the safety of every other driver on the road.
Have open and honest conversations with your loved one about leadership. Involve other family members, friends, and health care providers to reduce the stress of discussions.
Myth: A person with dementia cannot be left alone
Fact: The amount of supervision needed for a person with mild cognitive impairment or dementia varies widely.
No two people with a memory problem or dementia have the same experience. With the right supportive resources, people may be able to live on their own safely for a long time. Be aware of how the disease is progressing. If you see any of these warning signs, it’s time to consider not leaving your loved one alone:
- Confusion appears under pressure.
- Unexpected or dangerous situations cannot be recognized and responded appropriately. For example, how would they react if a stranger came to the door or if a fire broke out?
- Has difficulty using the phone and may not be able to call for help.
- Walks around or becomes disoriented in new situations.
- He becomes anxious or agitated if he is alone for a long time.
Myth: People with dementia cannot continue to live at home with their families
Fact: Sometimes, living with a family is the best option for people with cognitive change. Sometimes that isn’t the case.
Every family is different, just as every person with dementia is different. In some situations, living with the family is a great solution. It may provide much-needed structure and support for a person with dementia. Other families have circumstances that make this difficult or impossible. At some point, choosing a nursing home may be necessary. The thing to remember is that no single decision is universally correct. The initial decision may need to be reconsidered as dementia progresses.
If you have relocated with you, consider how you can involve family and friends in providing care. While you may feel that your need for help is obvious, others may not realize the challenges you are dealing with. Also consider hiring a professional caregiver. Bringing in more resources for your loved one can help support caregiving efforts — and help you avoid caregiver fatigue.
Myth: You can’t communicate with someone with dementia
Fact: People with dementia continue to enjoy the ability to interact with others and experience emotional bonds.
Communication remains possible throughout all stages of amnesia and dementia. If your loved one’s behavior seems confusing to you, keep in mind that people with dementia often see their surroundings differently and may find cause for concern since you don’t see anything threatening. Try to meet them wherever they are. Avoid forcing them to conform to a reality they no longer encounter. Keep in mind that even if your loved one does not understand your words, your tone of voice and body language convey a lot of information. Your loved one may respond to these nonverbal cues for longer than you say.
Check out the book Learn to talk with Alzheimer’s By Joanne Koenig-Coste for more information on maintaining contact with your loved one, even as their experience with the world changes. You may also be able to use music in different ways to connect with your loved one.
Opening up to friends and family
With so many myths and misunderstandings about dementia, it is easy to understand why many caregivers are not letting others know about their loved one’s cognitive changes and increased needs for care. However, speaking more freely about dementia can help reduce the stigma experienced by the person with dementia as well as their caregivers. You may find that other people you know have had similar experiences and can provide you and your loved one with insight, empathy, and support you didn’t expect.
Heather Dubert is a Memory Specialist and Behavioral Health Case Manager at Fallon Health. Offers free counseling to Fallon members and their loved ones through the Alzheimer’s Association Care Counseling Program (Massachusetts/New Hampshire chapter). cevery 24/7 Alzheimer’s Association Helpline at 1-800-272-3900 (TRS 711) for information or to request a consultation.