Preserving a Dementia Patient's Sense of Self


When I think about it, much of what I do as part of caring for my mother who has Alzheimer’s disease involves preserving her identity. But in order to do this as best we can, we caregivers must strive to understand what a person’s identity is and how dementia affects it.

Sally Magnusson, Scottish broadcaster and author of “Where Memories Go: Why Dementia Changes Everything”—an amazing account of her experiences caring for her mother with Alzheimer’s—describes identity as “essential me-ness.”

In the final stages of her mother’s illness, Sally reflected on the deeper meaning behind her efforts as a caregiver: By “getting you to sing, making you laugh, talking to you, holding you, stroking you and trying, however incompetently, to entertain you, we are really cherishing the real you.”

For an even more enlightening take on how identity and memory loss interact, it is important to try to understand the perspective of people who are suffering from dementia as well.

Dr. Richard Taylor, psychologist, advocate and author of “Alzheimer’s from the Inside Out,” challenges us to listen the real experts—those who are living with this disease. Dr. Taylor was diagnosed with Alzheimer’s when he was only 58 years old, and caregivers, health care providers and the general public can gain a great deal by examining an insider’s point of view.

“We need support to stay in today,” Dr. Taylor urges. “Staying in the past is not the highest priority for any human being. Reminiscence is overrated, over-used and over-depended upon by caregivers to assure themselves that we [the patients] are still here.”

Dr. Taylor’s words have helped me realized that, in order to help Mum participate more fully in life, I need to move beyond simply having cozy conversations about her childhood and strive to empower her. And I must do so in ways that are pleasurable, meaningful and engaging. I have to know her and care about her as an individual. I have to understand her “me-ness.”

Dr. Lee-Fay Low, dementia specialist and author of “Live and Laugh with Dementia,” writes about the importance of determining what is enjoyable, important and engaging for each dementia patient.

Dr. Low suggests that people living with early stage dementia address the following questions. For those who are living with more advanced dementia, she urges their caregivers to work with them to find the answers.

  1. Imagine a great day. What would that be like for you?
  2. Are there things you have always wanted to do but have not done yet?
  3. Who are the people you want to spend time with? How can you communicate with them more often?
  4. What do you enjoy doing now that you wish to continue doing?

For example, my mum has always loved spending time with her grandchildren, gardening, listening to music, knitting, sewing and cooking. So we find ways to continue doing all of those things. Of course, we adapt and engage in these activities a little differently from how Mum might have done them before, but we still do so in ways that are purposeful, satisfying and useful.

Unfortunately, activities that a loved one enjoyed earlier in life may now cause them a great deal of confusion and even agitation or frustration. As neurodegenerative diseases progress, it may take a bit of trial and error and creativity to find hobbies or pastimes that are a good fit. Adapting them to meet your loved one’s unique needs can also be a bit of a process as well, but patience is key.

Being useful and not being a burden are both hugely important to my mother. Many people with Alzheimer’s, dementia, and other illnesses and disabilities share these concerns. It is natural for humans to strive for a sense of purpose whether they are ill or in perfectly good health. This is a large, defining factor of who we are as individuals.

As family caregivers, it is crucial for us to do all we can to ensure the highest possible quality of life for our loved ones. Helping to keep their identity intact and assisting them through any difficult changes that may arise are both necessary for maintaining their sense of self.

Sarah Jane is a freelance writer/researcher and part-time caregiver for her mother Eleanor* who has dementia and lives at a rest home nearby. Sarah and her mother spend Saturdays enjoying each other’s company, pottering about and having the occasional adventure. Sarah lives in New Zealand where she writes and speaks about dementia-related issues.

Saturdays with Mum

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Just a slightly different perspective. My Mom was widowed very young, with 4 girls and a dairy farm to deal with. She was also very active in our church, including leading Bible studies and being an amazing soloist! You can imagine how many demands she juggled! Her dream always was that when she could no longer live alone (which happened with a fall and vascular dementia combination just after her 90th birthday), she wanted to go someplace where someone else would do everything for her (which is how she perceived the NH where her mother and sister spent their last few years). So when she came to live with us 7 years ago, I focused on all the "make her feel useful" aspects - peeling carrots, setting the table, filling water glasses, etc. She was willing and cooperative, but eventually mentioned that she didn't really want to work any more. In fact, eyes twinkling, she said how much she enjoyed watching others do the work she had always had to do. So I refocused. I remembered that she had been caregiving since she was 9 years old and went to work as companion to a blind lady, then studied nursing and ended up caregiving for her husband as he navigated major depressions and for both her husband's parents throughout their final (and lengthy) illnesses, then helping raise several grandchildren, etc. The thought I had was "this woman deserves some rest! No wonder she dreams of being taken care of!" She has been more than "useful" all her life. So I am working on finding time and ways to pamper her. She won't ask for anything she thinks would require effort, but I get big smiles and thanks when a glass of lemonade or cup of coffee or little special snack shows up unbidden - or when I start playing hymns so she can sing along. And I keep her supplied with word-game books, word-game TV shows, cards and laptop desk for Solitaire, etc. In short, she wants to be pampered for a change more than she wants to keep being useful, and I understand and agree. I tell her how important it is to me to still get hugged by my Mom every day - how many 67-year-old women get that opportunity? Oh, and occasionally, she will make "useful" comments on parts of my decor she thinks could be more attractive. LOL. Adaptations have been made, but she doesn't always 'win' these discussions. :). Anyway, she is enjoying being more ornamental than useful. Sounds like that's not very common, but I thought it might be useful to hear a different experience. And I'm very aware that this probably only works because she is inherently not demanding, and receives my attentions as gifts, and not as "her due". As much as I can lose my serenity over incontinence issues from time to time, or feel impatient when having the same conversation for the umpteenth time in a row, I still feel very blessed to be able to care for the ultimate, lifelong caregiver to the best of my ability, and without it dominating my entire life. It won't be true or everyone, but I do recommend a deep dive into who your elder has been and what demands they may be glad to let go of. They can feel appreciated and loved even if they are understandably tired of being useful.
Excellent post...PLEASE keep them coming..this is exactly what we are going through everyday!
Great post! I'm going to share those questions with my mom...