Posted on Jun 13, 2016
At Senior Helper Contra Costa, our first priority is the safety and well-being of our clients, many being seniors who suffer from Alzheimer’s or dementia. But, well-being encompasses more than just a physical state, but also a recognition that mental and emotional issues affect many elderly client’s life in a significant fashion. One of the main concerns of those diagnoses with Alzheimer's is often the stigma that they face due to the reoccurring myths and misconceptions that others have about Alzheimer's. One of the main goals of Senior Helpers is to help fight Alzheimer's stigma and to educate the public about the reality of the disease.
In an article recently published by the Alzheimer's Association, there is a good discussion about the impact that Alzheimer's stigma can have on individuals as well as steps to fight stigma and related issues. Stigma is defined as the use of negative labels or perceptions to identify a person with a disability or illness. Stigma generally exists and persists due to a lack of public awareness and understanding about a certain people or concept, this case being Alzheimer's disease. For example, a common misconception about someone living with Alzheimer's disease is that once they are diagnosed they cannot function at their usual capacity. It isn't uncommon to see a friend or loved one who is uniformed about the disease try and talk to the individual in simple terms as if speaking to a 7 year old child. Although, some individual's living with Alzheimer's disease, depending on the stage, do have trouble processing language, they also can often sense when they are being treated differently or as if they are no longer the same person that they once were.
We need to do everything in our power to fight Alzheimer's stigma, because it can have very negative effects on those living with the disease. When individuals are constantly belittled, dehumanized, and talked down to, simply because they are living with Alzheimer's it can prevent the individual from seeking proper medical treatment when symptoms are present, receiving an early diagnosis or perhaps any diagnosis at all. That can mean not getting the best quality care, making appropriate plans for the future, benefitting from available treatments or therapies, failure to develop a support system, and eliminating the chance of participating in clinical trials. Senior Helpers wants patients and their families to accept a diagnosis of Alzheimer’s or dementia, even in early stages so proper plans can be made. It isn't just the individual-level impact that the stigma affects, it also impacts Alzheimer's disease research. According to the Alzheimer's Association, "the government funds Alzheimer's research at lower rates than any other diseases, even when the cost of caring for Alzheimer's disease is significantly higher."
Those living with Alzheimer's disease should be aware of the challenges they may face now or in the future due to their diagnosis -these experiences are also often felt by their families and caregivers. An Alzheimer's diagnosis can affect friendships and test loyalty and some friends may be in denial about the diagnosis and withdraw from the diagnosed individual, which leads to feelings of abandonment and isolation. It can also affect family relationships as many family members may not want to accept the diagnosis or talk about the disease. They may assume things about the person that aren’t actually correct.
We teach our caregiver the Gems System, a Teepa Snow-inspired program that focuses on the abilities of a person with dementia or Alzheimer’s, rather than the limitations. This type of care allows a caregiver to see the value of every person, no matter what stage they may be in. Senior Helpers offers a free 35-minute DVD about dementia and how our plan of care may be superior to others. One can request a free DVD at http://www.seniorhelpers.com/services/senior-gems.
A common situation we often see is that others may approach the care partner or family member of someone living with Alzheimer's to ask how the individual is doing, rather than asking the person directly. Such an approach belittles the person with the diagnosis and makes them feel unworthy of social interaction. It is also important to be prepared for negative reactions to the diagnosis, which prevents some individuals from seek help from others.
While this all may seem disheartening, there are tips to overcome the stigma that those living with Alzheimer's often face. These tips are based on the insight, advice, and experience of current or former members of the Alzheimer's Association National Early-Stage Advisory Group (ESAG) -a group made of up individuals in the early stage of the disease who help raise awareness about Alzheimer's …
1) Be open and direct by engaging others in conversations about the disease and the need for prevention, better treatment, and hopefully, an eventual cure. It is also important that individuals interact with others that are diagnosed with the disease to help each other understand how their lives will change, while also building a supportive community of those who can relate.
2) Communicate the facts with your loved ones and those you interact with. By sharing accurate information, one can help dispel common misconceptions about the disease and its effects. Ways to achieve this are offering information through pamphlets, online links, and other modes of communication. The more people understand the disease, the less change for Alzheimer's stigma.
3) Seek support and stay connected. By staying involved in groups, activities, and relationships, individuals are able to build a meaningful network to rely on and seek help from if needed.
4) Do not become discouraged, despite the unfortunate circumstances. "Denial of the disease is not a reflection of you." Use their denial or misunderstanding of the disease as an education opportunity and remain positive even through the darkest of times, this can really change an individual's future course.
5) Be a part of the solution. An individual living with the disease has a powerful voice to raise awareness, campaign for more Alzheimer's support and research, and to end stigma.
Senior Helpers of Contra Costa serves families and their seniors in many parts of the East Bay helping to bring to families peace of mind and specialized care for their loved ones. Our caregivers provide professional care to our local seniors in areas such as Danville, Walnut Creek, Lamorinda, Alamo, Oakland, Alameda (and other East Bay cities) , in the form of check-in home visits, companion care, Alzheimer’s and dementia care, housekeeping, driving and much more. For more information on how you can discuss a possible caregiver from Senior Helpers, call 925-376-8000 or visit our website: http://www.seniorhelpers.com/contracosta/