Respecting the Sense of Self in Alzheimer's Patients

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.”

She was satisfied with 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

Watch 1 Minute of 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.


(6) Step into Their Shoes

Source

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 Isaac Weithers

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Comments 56 comments

raeyecarlos profile image

raeyecarlos 9 months ago

Great hub to remind people of the most important things- keep on loving, caring, and respecting people, especially when they're at a situation when they can no longer do this for themselves.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Raye, you said it perfectly. Thank you for commenting and affirming this principle.


Besarien profile image

Besarien 9 months ago

Awesome article, Ms.Dora. People tend to treat a disease instead of treating a PERSON who has a disease. I saw that with health professionals and family members. Having nursed one parent through Alzheimer's and one through terminal cancer, I know it can be tough to separate the person from what ails them and the meds too but that human connection is exactly what needs to be maintained to get all parties through as comfortably and healthfully as possible. Even in the final stages of my mother's Alzheimer's I'm convinced she had lucid moments where we connected- a look of recognition, a squeezed hand right up until the end.


Jackie Lynnley profile image

Jackie Lynnley 9 months ago from The Beautiful South

Great advice on caring for Alzheimer's patients. Nursing homes could use a lesson from this. I have yet to go in one and not see the negligence. Glad you can still have your mother with you Dora. God bless you for it.


manatita44 profile image

manatita44 9 months ago from london

Great awareness Hub. Alzheimer sufferers can be very aware sometimes and the sense of self/identity or self-esteem, can be very much alive.

That's your mom, Dee? She looks rather well. Yes, the video is heart-felt all right. Very cute. Great Hub!


Ericdierker profile image

Ericdierker 9 months ago from Spring Valley, CA. U.S.A.

I sure learned a lot here. You always make these articles so that they are readily applied in thought. I think by sharing these you do more to help us see compassion than any preacher man.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Besarien, "People tend to treat a disease instead of treating a PERSON who has a disease" is a sentence I should have included in my article. Thanks for your important contribution, and I pray that my readers notice it.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thank, Jackie, for your valuable input. So many of the workers in these health care facilities are just workers for pay, not really caregivers. Thank God for those who do a good job.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Manatita, thanks for reading and and for watching the video too. I know that you are familiar with these issues. Yes, that's my mamma in all three pictures. She is still physically strong.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Eric, your comments are usually so kind. We all preach by different methods. You do a great job in your arena. Thanks for encouraging me in mine.


lambservant profile image

lambservant 9 months ago from Pacific Northwest

Once again you have offered us valuable insights. Your # 1 is a pet peeve of mine when caregivers, whether doctors, nurses, home care caregivers, family members or friends, talk about the person as if they are not in the room. I am always surprised when people look at me strangely when I tell them we need to include the person in the conversation or go somewhere privately. I loved the little video. Very precious.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks, Lori. Really surprising that some professionals are not that sensitive. We have to keep advocating for those who cannot speak for themselves.


MarleneB profile image

MarleneB 9 months ago from Northern California, USA

Your tips are most helpful. They are all excellent. I think standing in the patient's shoes helps a lot and I especially like #4 - Maintain Connectedness. I believe that even though the patient may not be able to express themselves outwardly, they are still aware. Staying connected to them and the things they care about is truly important.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks, Marlene. The tips you like are super-important. The patients deserve as much attention as we can give.


annart profile image

annart 9 months ago from SW England

This is so good, Dora. I find that many of the above also apply to those with Parkinson's. Though those patients are more aware (and therefore become very frustrated), when they can't, or choose not to, speak it's possible to use facial expressions, like a raising of the eyebrows for 'yes'. Eye contact is also important as are hugs etc., physical contact being much more important when communication diminishes. In fact, these sort of communications apply to many who are suffering when older.

You give superb advice here, for any who have no idea either what happens or how to deal with it; that in itself is most important. You are giving of your experience to help others and that says a lot; how lovely to be cared for by you!

Ann


PegCole17 profile image

PegCole17 9 months ago from Dallas, Texas

You have really tugged on my heart strings with this one. It is so important to realize that the patient has feelings and wants to be addressed directly even when they might not know the answer to the questions. That video of a moment of clarity was absolutely wonderful. Thank you for sharing these important reminders to help us in this truly important and valuable role.

When my Aunt Helen was in the last stages and could not speak clearly, it was always a treat to hear her say I love you out of the blue. She was fond of taking my hand and kissing it. I miss her.


sallybea profile image

sallybea 9 months ago from Norfolk

An awesome article MsDora.

Your understanding of this condition is plain for all to see.

When I worked with an elderly lady with dementia I always made it my business to always see that she was always included and that she was given the opportunity to express her opinion. I also made sure that we did something each day which gave her pleasure simple, her pleasure was my pleasure.

Oh, I do hate it so much when someone says 'does she take sugar' just as if the person were not in the room.

You are uniquely placed to write these articles and you are doing an exceptional job, very well done.

Best wishes,

Sally


MsDora profile image

MsDora 9 months ago from The Caribbean Author

You're right, Ann. Many old people with conditions other than Alzheimer's suffer similar neglect. Thanks for your valuable contribution.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Peg, happy that you enjoyed the article and the video. Thank you for sharing the precious moments you had with your Aunt Helen.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Sally, I could tell that you were a compassionate caregiver. Thanks very much for encouraging feedback.


billybuc profile image

billybuc 9 months ago from Olympia, WA

As you know, I'm walking this path with my best friend. I so appreciate you writing about this horrible disease....thank you, Dora!


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Bill, glad to share what I learn; I was so ignorant of these issues before my caregiver stint. My heart goes out to your friend and to you.


AliciaC profile image

AliciaC 9 months ago from British Columbia, Canada

Your hubs about Alzheimer's disease are excellent, MsDora. It must be hard being a caregiver for your mother, but I'm sure that the advice and experiences that you've shared will be helpful for other caregivers. Thank you very much for creating this hub and all the related ones.


North Wind profile image

North Wind 9 months ago from The World (for now)

I agree completely with this hub, of course. Just because they forget does not mean we are allowed to forget them as people. I really see this illness as a way for people to show unconditional kindness to others without any motivation. We get to truly do unto them as we would have done to us. We want to be clean so we should make sure they are clean and presentable. We want to be respected so we should respect them. We want to be shown appreciation and attention so we should show them some too. I appreciate your continuous discussion on this matter. There is much to be said on the topic of care for these precious souls.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Alicia, thanks for your kind and encouraging comment. Genuine care giving is difficult, but I subscribe to the counsel I offer in my articles and it helps. I appreciate your concern.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

North Wind, you really nailed it in your comment. I agree totally and I appreciate your valuable input.


Frank Atanacio profile image

Frank Atanacio 9 months ago from Shelton

Im always moved by these types of hubs MsDora.. I can feel the beauty in your words when you talk about these conditions.. it shows you really reaspect and care God bless you


denise.w.anderson profile image

denise.w.anderson 9 months ago from Bismarck, North Dakota

I love this concept! It is so important that we as people realize that others, no matter their station or situation in life, are just as important as we are! When we do so, we unlock the powers of heaven in both our behalf and theirs. We are treating them the way we would like to be treated, and the way our Savior would treat them if he were here. How powerful!


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Hi Frank, I hope that I do a good job in the actual caring. Thanks for such a positive feedback.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Denise, your comment is empowering. It helps us how our care giving relates to God's will for us and our patients. Thank you.


swalia profile image

swalia 9 months ago

A great hub reiterating the values of kindness and compassion!


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thank, swalia. I appreciate your kind comment.


fpherj48 profile image

fpherj48 9 months ago from Beautiful Upstate New York

Ms. Dora.....Thank you so much for sharing this valuable information with your readers. My mother and I went through this journey with her older sister years ago.

Dementia in it's various forms and stages is another of those diseases that affect one's entire family. It is so important for family members to have the heart, soul and awareness in terms of caring for and supporting their afflicted loved ones.

You have written a wonderful, helpful and very vital hub. Peace, Paula


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Paula, thanks for your feedback. Good to have some affirmation from someone who understands the Alzheimer's situation. Happy to share!


FlourishAnyway profile image

FlourishAnyway 9 months ago from USA

This was so filled with empathy and wisdom. You are a kind, beautiful soul.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Flourish, what an encouraging thing to say! Thanks to you for understanding and demonstrating the compassion that caregivers and their patients need.


word55 profile image

word55 9 months ago from Chicago

Hi Dora, Your expertise as an Alzheimer’s caregiver is very informative and taken very well. Your continuous hubs on this subject are appreciated. Keep up the good work. By the way what is “end stage dementia?” Voted up!


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Word, thanks for your kind comment. End stage dementia is the very last stage of the disease before it claims the patient's life.


lifegate profile image

lifegate 9 months ago from Pleasant Gap, PA

Another "well done" MsDora. Have you done so already, or have you thought about putting your hubs together in book form? It would make an easy reference for caregivers like yourself.


Nell Rose profile image

Nell Rose 9 months ago from England

My friend, she is portugese, she was in a great distress when I saw her last week, her English got really bad and I had to sit her down and ask her to speak slowly. Evidently she had just received a phone call saying her mother, 85, tests came back with Alzheimers. I sat her down and managed to calm her down, this is great MsDora, I will let her read it, nell


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Pastor Bill, thanks for your encouragement. I was dreaming about it, and my working title was published last year by someone else. That discouraged me, so thanks for suggesting it.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks Nell. Great that you could be there for your friend. She'll remember your kindness. Thanks for sharing.


sukhneet profile image

sukhneet 9 months ago from India

Really a wonderful write up. It's an informative post indeed. I know one of my uncle who had Alzheimers disease. The pain and trouble Alzheimers patients go through is immense. I pray for all such people going through it and also pray for their family members so that they deal with them patiently.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Sukhneet, thanks for the prayers. Both the patients and the caregivers need them.


DDE profile image

DDE 9 months ago from Dubrovnik, Croatia

Hi MsDora you write informative hubs and on such important topics. A way to learn of this disease. All my best to you.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks, Devika for your ongoing support. Glad you like my topics.


ignugent17 profile image

ignugent17 9 months ago

Step into their shoes. That is really hard and that is why I always respect and appreciate caregivers. I know it is not easy.

Great hub. :-)


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Imelda, thanks for your feedback. Just like I respect what you do as a teacher. None of it is easy, but with dedication, we can do it.


Michael-Milec profile image

Michael-Milec 9 months ago

Lord have mercy, was my first reaction at the end of your influential and useful article introducing both a patient as well as a caregiver in the light I have never seen before. Thank you MsDora. Detailed steps of dealing with people who in their present condition are within the same as they always has been, teaching us always to maintain composure highly alert to their spiritual awareness and a level of joy and happiness. I am leaving touched and educated in the area I never had chance to know before. Thanks again.

May the Lord bless and strengthen you in your service to humanity. Peace with us.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Michael, it makes me happy to know that you learned something new from my article. I appreciate your reading and commenting.


truthfornow profile image

truthfornow 9 months ago from New Orleans, LA

You make some very good points here. People always need to treat people like people. I hate when people take over or about people and act like they are not in the room.


aviannovice profile image

aviannovice 9 months ago from Stillwater, OK

This was very well done. It is so important to put oneself in someone else's shoes, but we tend to forget that. Thanks for the reminder.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Truth, thanks for your kind comment. I appreciate your input.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks for commenting, Deb. That is a reminder we need constantly.


bravewarrior profile image

bravewarrior 9 months ago from Central Florida

Dora, you're providing a valuable service to caregivers and patients with these articles. One thing we all need to remember throughout life - regardless of the circumstances - is to do unto others as we'd have others do unto us.

I love the video of the mother and daughter. Very touching.


MsDora profile image

MsDora 9 months ago from The Caribbean Author

Thanks, Shauna. Happy to help others while I primarily help myself. "Do unto others . . . " is a meaningful creed to live by. Thanks for the reminder.

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