This blog is written by Angela Lunde, a dementia education specialist in the education core of Mayo Clinic’s Alzheimer’s Disease Research Center at the Abigail Van Buren Alzheimer’s Disease Research Clinic in Rochester, Minn. Angela is just fantastic and has written many wonderful blogs that have created a lot of interest and support for AD caregivers. You can visit her blog at Expert Blog for more information.
Last week, a senior living complex hosted a fair of services. In a large and beautiful common area information was available about a variety of amenities, programs, and services offered at the facility.
I noticed that while each table had a handful or more of residents chatting and inquiring with facility staff, one table drew little traffic. It displayed information for individuals and families dealing with dementia and Alzheimer’s. Given that the average age in this residence was 85 that seemed odd. Or was it?
In the last blog, Dr. Smith wrote about the confusing jargon that surrounds memory loss and cognitive changes. He said that while a barrier to receiving an early and clear diagnosis can sometimes rest with the doctor or healthcare provider, it may also be fear on the part of some families to hear the “A” word. There’s an Alzheimer’s stigma.
The stigma is associated often with suffering, loss of mind, loss of independence and disability. The fear of this stigmatization may delay patients and their families from seeking a medical diagnosis — even as the symptoms become blatantly obvious. The word Alzheimer’s can stir up such intense fear that it can inhibit any discussions of it with friends and even some family members.
With such a stigma, why diagnose? We all know that you can’t make your loved one well once you have named the diagnosis. So here’s my point: early diagnosis offers persons with the disease and their caregivers and families a chance at a better quality of life. If stigma makes a person with memory concerns resist seeing a doctor, then they’re losing out on the benefits offered by timely treatments, therapies, and programs.
If stigma prevents caregivers from seeking support from family and friends, as well as formal services, then ultimately there can be additional negative outcomes for these caregivers — increased burden, stress, depression and physical illness. Research shows that without supportive services and programs for caregivers, premature nursing home placement for their relative with dementia increases.
As long as there is a stigma associated with Alzheimer’s, people with the disease and their families will be far less likely to open up and seek help and support. Below are just a few of the most common and yet I feel detrimental myths and misconceptions about Alzheimer’s still out there today:
- Myth: Dementia and Alzheimer’s is just normal aging. Stating that Alzheimer’s is not a disease and that dementia is due to normal aging is irresponsible. There’s no cure or prevention, but that doesn’t mean we shouldn’t diagnose and treat the symptoms, take full advantage of therapies and supportive services, and plan responsibly for the future. Not recognizing Alzheimer’s as a disease keeps people feeling even more shame and isolation.
- Misconception: People with Alzheimer’s become agitated, violent and aggressive. No, not all people with Alzheimer’s are agitated, violent or aggressive. The disease affects each person differently. Most often symptoms such as these are a result of the increased confusion and fear due to changes in the brain, as well as frustration from a decline in the person’s ability to process information and communicate their needs verbally. By understanding the disease, caregivers and families can adapt their approach and methods of communication and prevent most negative behavior.
- Misconception: People with Alzheimer’s can’t function, can’t have a quality of life, and can’t enjoy activities. Not true! People with the disease can live meaningful, active lives. They can achieve a renewed sense of purpose. Earlier diagnosis and medications are helping with this. People with early stage Alzheimer’s want to get the message out that they’re living with Alzheimer’s, not dying from it. In the later stages of the disease, those with Alzheimer’s who are treated as whole human beings in positive environments can still give and receive great love, participate in activities and share moments of joy and laughter.
As long as these and many other myths and misconceptions about Alzheimer’s continue, Alzheimer’s will carry a stigma. This means that many of those impacted will tend to hide and withdraw in shame, fear, and embarrassment. Somehow, some way, we need to break down the stereotypes and stigma.
Once we wholly understand and believe that individuals with the disease can maintain quality in their life well into the disease, and once we are open and honest about the disease itself, we can begin to change perceptions.
We could become a dementia compassionate community and society, taking dignified care of people with Alzheimer’s (and related dementia) while embracing and accepting their families and caregivers.
There is a wonderful document called The Alzheimer’s Disease Bill of Rights. It was drafted by Best Friends developers Virginia Bell and David Troxel. This bill of rights beautifully articulates the core principles every person diagnosed with Alzheimer’s or a related disorder deserves:
- To be informed of one’s diagnosis
- To have appropriate, ongoing medical care
- To be productive in work and play for as long as possible
- To be treated like an adult, not like a child
- To have expressed feelings taken seriously
- To be free from psychotropic medications, if possible
- To live in a safe, structured, and predictable environment
- To enjoy meaningful activities that fill each day
- To be outdoors on a regular basis
- To have physical contact, including hugging, caressing, and hand-holding
- To be with individuals who know one’s life story, including cultural and religious traditions
- To be cared for by individuals who are well
Virginia Bell and David Troxel’s book is one I highly recommend. It is called “A Dignified Life: The Best Friends Approach to Alzheimer’s Care — A Guide for Family Caregivers.” The book offers ways to bring dignity to the lives of both those who have Alzheimer’s and those who care for them.
By Angela Lunde
With Mayo Clinic health education outreach coordinator
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