As Alzheimer’s and other dementia progress, the person’s reliance on other people increases. When a person can no longer fully care for themselves, there’s a tendency to treat them more like a patient than a person.
With all of the demands of caring for a person with Alzheimer’s, it’s easy to become rushed and frustrated. This often leads to an impersonal interaction where their needs and feelings are overlooked.
It’s up to us to recognize these situations and remember to observe and listen to the person with dementia. Respect comes in a variety of shapes and sizes, but it ultimately helps to preserve their identity and maintain their dignity.
I discuss this further in my article, Respecting the Person with Dementia, which was published by Next Avenue.
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The problem of caregiver development mode is to understand the difference between hospice and palliative with the projected outcome. I suggest that the GP should be kept in the loop to identity vitals which would have a bearing on calming patient and caregiver. The doctors in the final stage leave the end to nursing while the need is for a more hands on approach rather than morphine. The entire end protocol has to be examined by Medicare with a more sympathetic payment allowance to allow the GP to be on call, house calls should be the norm in cases of terminal. The person, the patient should be treated more humanely at the end. This has been left to the family.
Very good points Norman. Respect should be throughout a person’s entire life, and our institutions need to do much more. Thank you for commenting.
Great article, Mike. You are a member of the International Caregivers Association and I am honored to recognize you here. The ICA (www.icareassoc.com) supports a larger interprofessional care team for all persons living with dementia. As Norman Duncan pointed out, most family caregivers are left in isolation beginning in the middle to end stage of the dementia.
My recent book, Alzheimer and Dementia Coaching: Taking a systems approach to creating an Alzheimer’s-friendly healthcare workforce” points to the weakest links in our medical model and advocates for a greater care/social model whenever dementia is the case.
This article gave excellent examples of ways in which individual’s with Alzheimer’s Disease do not receive due respect from caregivers and others. The failure may come in the choice of words; the removal of decision making in cases when the individual is quite capable of making a decision; the tendency to talk over or around the person rather than include them directly in conversation; the failure to respect the individuality of each person (personal history; cultural characteristics, traditions, and practices); the failure to recognize and facilitate in the present the role in life with which the person closely identified. Each and every individual is an adult with a history. We need to get to know them and treat them as such.
Thank you for taking the time to read and respond to the article, Lois. You have summarized it very nicely.
Louis Arsenault – While a choice can be given, it is how it is presented that makes all the difference in the world. As you know, dementia renders the left brain incapacitated while the right side of the brain is very much intact and active for many years. Making a decision requires a well functioning left brain (logic, rational, and objective decisions). One of the common examples I give caregivers is to ask for permission by simply stating a short statement and then adding “is that OK?” A yes or no answer is what you are looking for as this is easy for them to handle but yet not always accurate. However it does give them some power and control at that moment.
You are so right in saying that a person living with dementia does hear everything. It is simply they cannot find the word to respond. So whatever is said around them, over them, or about them – it is indeed recorded in their memory. Now that it is possible to achieve remission in dementia, those persons who chose to achieve remission through treatment can indeed appear much different to those caregivers who have not given them the respect they deserve as they will be able to demand it on their own, after remission. I know, I’ve see it first hand.
Indeed personal preferences and history is central to understanding that individual. Without that it is impossible to provide the “person-centered care” everybody talks about. Person-centered care requires a good understanding of personal history, family history, work history, facial traits that can be disclosed in face reading (see http://www.amazingfacereading.com), and time to spend with the person. Caregivers are often rushed to barely clean, dress and feed the individual living with dementia and completely miss the treasures within that individual, the life experience and wisdom they bring, and most of all – they are our teachers. We are their students. I think many of us would fail the course if tested, don’t you think that too?
I appreciate your comments. Over my more than 30 years in eldercare, I have received so much more than I have given. Much of what I have learned was from the people I served.