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How to Respect the Sense of Self in Alzheimer's Patients

Updated on February 1, 2021
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MsDora shares information and insights from her experience as a four-year caregiver to her late mother who suffered from Alzheimer's.

The term sense of self is often used interchangeably with self-identity, self-image and self-concept. All these terms refer to a person’s perception of who he or she is.

Some professionals in the study of Alzheimer’s believe that the sense of self is present in the first and middle stages, but may disappear during the final stage. Others believe that:

“While many personal and social competencies reduce in a person with dementia, a person’s self carries on. . . Mutual respect and cooperation let the self flourish, even in end stage dementia.”

Source

The higher the sense of self, the better the quality of life.

Concerned caregivers prefer to err on the side of compassion, assuming that the sense of self could possibly be there, rather than trust their judgment which could possibly be faulty. Here are a few ideas which will help caregivers maintain healthy respect for the patient’s sense of self, as best they can.


(1) Recognize Their Presence

It is tempting to treat the patients as objects after they have lost their sense of time and place, the ability to exercise good judgment, and the skill to communicate intelligently. None of these losses, however, proves that they have lost their sense of self. They still appreciate personal greetings, smiles, and strokes on the cheek.

Some individuals query the caregiver in the presence of a patient. “Does she still know you?” “How is he behaving now?” It is disrespectful to discuss patients in their hearing, while ignoring them as though they were not there. They may still interpret what they hear even though they are not able to join the conversation.

The Alzheimer’s Association suggest that we remember who they were, and give them the level of acknowledgment to which they were accustomed. Address them by name and look them in the eye. Who knows when a moment of clarity will occur?


(2) Keep up Their Appearance

My mother surprised me one day when I was getting her dressed for her brother's visit. Usually, she does not want to wear her "going out" clothes at home, so I thought she could put on a regular house dress.

“I’m not wearing that to go see him” she informed me.

“You’re not going anywhere,” I tried to explain. He's coming to see you.”

“Well, that doesn’t look good enough.”

She wanted to be seen in a “going-out” dress.

Source

Their pride is intact whether or not the patients seem to care. Sometimes, left to themselves, they choose soiled over clean clothing. They seem to do the opposite of what they want to do, but caregivers respect their right to clean, decent, appropriate clothing and facilitates their pleasing appearance.

Proper hygiene accompanies proper appearance and includes oral hygiene, hair care, skin care, nail care, and beard grooming. Patients need reminders and supervision to take showers and brush their teeth.

Some patients, like toddlers, get themselves and their surroundings messy when they eat. It is extra work for the caregiver to keep them clean, but leaving them looking dirty is not an option. Most patients would ask for an immaculate appearance, if they could.


(3) Focus on Holistic Care

Knowing that there is no cure for the disease, and that patients may become helpless, some caregivers focus on exercises to keep them physically active for as long as possible.

Other caregivers see the disease as mainly a loss of memory, and they focus on mental stimulation.

The holistic approach takes into account that individuals are body, mind and spirit. It recommends total care --physical, mental, emotional, social and spiritual.

  • One study confirmed that patients who had pet animals in the home or visited with animals daily had more positive outcomes from social interaction.
  • Another study found that memory books with notes and photos can help establish re-connection with loved ones.
  • In favor of herbs and supplements, there is enough evidence, although the research is ongoing, that patients benefit from Ginkgo biloba. (It is advisable to consult a physician before introducing supplements).

The holistic approach improves different areas in the patient's life; and there is a strong correlation between quality of life and sense of self.


(4) Maintain Connectedness

Whether or not the patients respond, it is recommended that caregivers try to maintain connectedness with them. When they stop speaking, they may still try to communicate through facial expressions. Caregivers who pay attention may learn to read these expressions, and react in a way that makes the patient know they're listening.

Caregivers may respond effectively by body language, by touch, and by their own facial expression of concern. Adopt a form of body language (like leaning towards them, putting hands on the chair, or around the neck) which shows attention.

Hum with them, play songs they know and like, and sing along. Live in the moment with them, for them.


(5) Make Them Comfortable

Learning to read the patients' expressions becomes more important as their cognitive ability decreases. They are not always aware of what’s happening in their bodies, and they may not be able to express their pain and discomfort in words. Some of their ailments have to do with issues other than Alzheimer’s.

They may demonstrate stubbornness when it is time to move, because of inflammation pain in the knee joint. They may let cups fall because of arthritis pain in the fingers. They may not look up at the caregiver because the glare of the light hurt their eyes.

First, caregivers must learn to notice the discomfort, then get professional help in determining the cause, and finally do whatever it takes to make the patient comfortable. Connectedness with the patients will help them communicate by gestures or facial expressions, so that they know when the patient is comfortable.


Source

(6) Step into Their Shoes

Because caregivers are people too, they can use their sense of self as a reference when determining how to respect the sense of self in their patients. Questions like the following will help to guide them:

  • If my cognitive abilities decrease, how would I want others to show their patience and understanding?
  • Would I want people to answer for me although I can answer for myself?
  • What will satisfy my sense of dignity in a similar situation?

Remembering that everyone is a candidate for some form of dementia, will help caregivers treat their patients with the respect that all human beings deserve.


References

Alzheimer's Association: Living with Alzheimer's: For Caregivers - Late Stage, Copyright 2016

Davis, Kristi: Daily RX News, Dementia and a Sense of Self (7/27/2012)

Department of Health, Victoria, Australia: Maintaining personal identity: respect and dignity (7/16/2014)

Lee-Frye, Betsy: About.com Alzheimer's/Dementia, Taking a Holistic Approach to Alzheimer's Disease (7/01/2008)

© 2016 Dora Weithers

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