Dementia is an umbrella term for many different experiences of cognitive change. There are a lot of misconceptions about dementia that can add tremendous pain to an already challenging situation.
To uncover the most common and hurtful misconceptions, I spoke with the experts - people living with dementia. What follows are eight misconceptions sourced from members of Dementia Conversations, a program of Dementia Friendly Nevada.
A magic pill can fix it.
Between ‘do this diet,’ ‘come to this clinic, ’and ‘spend your money here,’ there is a lot of misinformation out there. Since the 1970s, there have been projections of a cure in the next 5-10 years. While there is no magic pill, getting plugged in with support groups and seeking out the stories of advocates (like those featured in this article) can lead you to a guide of how to live well with a dementia diagnosis. - Sam Simon, Living with Early-Stage Alzheimer’s
There is no hope.
The overwhelming message from the Dementia Conversations group and other advocates is, ‘Yes, there is no cure, but lifestyle matters.” There are real challenges that come with dementia. AND many little things can be done to make each day a bit better, and these add up to making it possible to live well with a dementia diagnosis. - Nancy Nelson, Diagnosed with MCI
Dementia means only end-stage.
The Dementia Conversations group expressed frustration that people don’t realize dementia is a process. The stages of Alzheimer’s and dementia aren’t black and white, there is a lot of in-between. This misconception makes folks experiencing early-stage dementia feel invisible. Nancy Nelson expressed when someone is in early-stage, people say, “Wow, you don’t look like you have dementia.” Comments like this, “I forget things too,” and “You don’t sound any different than you used to” mean well. In reality, they deny the experience of the person you are talking to and cause unnecessary suffering. No one wants to be told how they feel. When someone tells you they have dementia, ask them about their experience, listen and believe them; that is their truth and reality.
Chuck McClatchey, dementia educator, shared “Showtime” is a real thing. This refers to experiencing a few days of fog when recovering after a speaking engagement. Many in the group reported being able to rise to an occasion but then needing recovery time after the fact. This is a good reminder that every day with dementia is different.
As soon as you are diagnosed with dementia, you should appoint a substitute decision-maker.
It is crucial to communicate our wishes. Do this early and often. Imagine being unable to communicate them yourself. What would you want your loved ones to know? How would you want decisions to be made? After a dementia diagnosis, you may want to move toward a shared decision-making model. Ensuring the person living with dementia’s voice is heard is a big part of the care partnership. The goal is to stay engaged to the greatest extent possible for as long as possible. Get creative with communication to make sure wishes are being understood and advocated. Communication in the later stages of dementia can become challenging and it may be necessary to help implement decisions made previously. - Dr. Jennifer Carson, Family Care-Partner and Director, Dementia Engagement, Education and Research (DEER) Program, University of Nevada, Reno.
Doctors have ALL the answers.
The group shared the importance of finding a doctor who will be a partner in our health. Nancy reflected that she interviews for her doctors to find the right fit. So much is unknown about dementia. It is essential to take anything you hear, from a medical professional or otherwise, with a grain of salt. Test it against your own experience. - Nancy Nelson
Caregivers deserve pity.
Of course, there are challenges when helping provide care for someone living with dementia. AND that isn’t the whole story. The Dementia Conversations group share that the relationship can be rewarding, especially when there is an active care partnership where both the person living with dementia and their supporters give and receive love and care from each other. - Kat Hartley, Caregiver, and Advocate
Dementia can be controlled through restraint.
Physical and chemical restraints do not address underlying unmet needs and cause more problems than they solve. There is a different lens. We can look at behavior as communication or as an expression of unmet need. By getting curious we can meet these unmet needs. This has two benefits. First, by validating the need we can quickly improve quality of life. Second, when the need is met it does not need to be communicated anymore and frequently the thing we were trying to restrain leaves all on its own. - Richard Wells, Living with MCI
Care partners know what they are doing.
If you feel like you have no idea what you are doing, you are not alone! First, as we have said in other misconceptions, each experience of dementia is unique, making it challenging to ‘know what you are doing’. What works for one person may not work for another. There is still so much we do not know about dementia. There is no perfect handbook. Many care partners also do not have access to the training they deserve and learn on the fly.
The bottom line? Keep your eyes and heart open. There are many false stereotypes and misconceptions about dementia. By being curious, we can reduce the pain and suffering caused by these misconceptions. - Anonymous