Alzheimer's Awareness Month: Dementia - Experiencing a New Reality
In honor of Alzheimer's Awareness Month, my brother, Richie (he/his/him), and I have decided to write a blog post about dementia together. I have talked a little bit about dementia on here before, but it has been a while. Richie and I used to volunteer in the dementia unit at St. Joseph's Manor in Holy Redeemer Hospital in Huntingdon Valley, PA. Richie volunteered there for five years while I volunteered there for three years. Richie also conducted some research intended for treating diseases like Alzheimer's, Parkinson's, and brain cancer, which are treatments geared towards brain tissue while he was attending Temple University in their bioengineering program. In addition, our grandfather (our dad's dad) who we call our "Pop" also fought a tough battle with dementia for six years and passed away in September 2015. We miss him a lot, but know he is watching over us every day. We hope that this article helps people develop a greater understanding of dementia and provides families with loved ones with Alzheimer's disease/dementia with hope and support:
CONTENT WARNING: I would like to mention that my brother and I are not medical doctors and we are sharing this content for educational purposes only. Social media should never be used as a substitute for medical nor mental health care. If you suspect that you or any loved ones are experiencing any health concerns, it is okay to get help, and I highly recommend seeking help from a medical doctor who is qualified to do so. In addition, keep in mind that everyone has mental and medical health, and no one experiences their health/disability journey the same. Every health/disability journey is different, and everyone has different ways that help them. You never know what anyone is going through as everyone has some type of struggles you know nothing about and not all health/disability concerns are experienced the same, visible, or disclosed so always be kind towards all perspectives and experiences. All are welcome here.
There are many controversial opinions about the negative aspects of dementia. Some people say that people with dementia should be able to die and meanwhile others say they live well. It is important to acknowledge that some of these opinions may stem from a lack of knowledge or misconceptions about dementia and the experiences of those diagnosed with it. When someone you love has dementia or is developing dementia, you should inform yourself as much as you can to avoid having a misinformed opinion about it and understanding what your loved one is actually going through. The severity of dementia and the type of difficulties experienced are major factors of how the quality of life of individuals with dementia is affected. So it is also important to view your loved one's situation as it's own case and through their own perspective in order to ensure that they receive proper care and support. There are some relatively broad statements that can be made about dementia, but these are often associated with the act of providing that care, the specific needs of individuals with this condition, and the proper characterization of dementia-related behavior and struggles.
"Empty Husks"
Through my experience volunteering in a dementia unit and having a grandfather with dementia, individuals with dementia are definitely not "empty husks." "Empty husks" are people who have no personality, character, or knowledge. While individuals with dementia lose a great amount of their memory, part of them is still there. People with dementia can still remember some things related to their personality and character. When my Pop was living with dementia, he lost a great amount of his memory, but he could still remember parts of his life. Just like any other disability, dementia does not define a person; it is only part of them.
I think that some people refer to people with dementia as "empty husks" because dementia changes not all but many parts of the lives of the individuals with this condition; they have short-term memory loss, the condition sometimes affects their behavior, eventually have physical disabilities and speech difficulties, and are unable to perform simple self-care tasks such as feeding themselves. The condition basically makes them almost a different person.
Quality of Life in Dementia
To reiterate, while dementia causes memory loss, people with dementia are not "empty husks" because they can still remember some things about their character and personality. For example, my Pop was a Navy veteran and when he had dementia he would talk about when he was in the Navy. In addition, when I volunteered in the dementia unit, one of the residents was from Italy and she remembered how to speak Italian and was from Italy a lot. Along with this patient, many of the other residents in the unit used to talk to me about other parts of their personal life such as sports they used to play, their old friends, interests, and college life.
Living Well with Dementia
Alzheimer's Society United Against Dementia strongly supports the live well approach of individuals with dementia. The following organization has a Live Well with Dementia program, which provides inclusive services to individuals in the early stages of dementia as a way to express their strong support for including those with dementia in the community as a way to show that their condition does not define them. The program's participants are asked for feedback about their overall experience in it in order to help reinforce it. The organization says that "they get pleasure in knowing that their feedback is influencing the future developments of the programme and what they share" (Alzheimer's Society 2020).
Accepting Dementia
As a disability advocate, I always say that people should show acceptance and understanding of the disability community not only because it is what is right, but out of respect. A true supporter of the disability community will literally do anything that makes disabled individuals/individuals with disabilities/differently-abled individuals feel respected because that is what true supporters do. Disability does not define any person; so, therefore, people should focus on what individuals with disabilities can do more than what they cannot do. While dementia is a very severe type of disability and eventually limits many of the abilities of its individuals as they get closer to their passing, they still have some abilities before they reach the severe stage. Dementia is diagnosable once they reach a stage known as mild cognitive impairment. While the challenges of individuals with dementia start to interfere with their daily life during this stage, they can still perform some life skills independently. These life skills vary among everyone with dementia as each person is different and include self-feeding, communicating, standing, walking, and participating in fun all-ability friendly activities such as gross motor play, arts and crafts, outings and events (full supervision required), cooking and baking with assistance (assistance and full supervision required), and hygiene (assistance and full supervision required).
If you or someone you love is affected by living with dementia or being a caregiver, family, etc. of someone with dementia, you are not alone and there is hope. If you or someone you know needs support right now, call the Alzheimer's Association 24/7 Helpline at 1-800-272-3900. If deaf, hard of hearing, or speech impaired, dial 711 to connect with a telecommunications relay service (TRS) or use the "Live Chat" green button in the bottom corner of the "Helpline" webpage on the Alzheimer's Association's website at https://www.alz.org/help-support/resources/helpline (available from 7am to 7pm CT).
You can also visit The Mighty's hotline resources page by clicking on this link: https://themighty.com/suicide-prevention-resources/
Citations
1. "Who are we to judge the lives that people with dementia are living?". TheGuardian.com (May 2018). https://www.theguardian.com/society/2018/may/31/who-are-we-to-judge-the-lives-that-people-with-dementia-are-living
2. "About Alzheimer's Society Live Well with Dementia Programme." Alzheimer's Society United Against Dementia. (2020). https://www.alzheimers.org/uk/get-involved/engagement-participation/live-well-dementia-programme
Thanks for writing about this. I have a family friend who was just diagnosed with it.
ReplyDeleteThank you for sharing your experience.
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