When I think about it, much of what I do as part of caring for my mother who has Alzheimer’s disease (AD) involves preserving her identity. But, how do you protect a dementia patient’s sense of self when they struggle to remember their own family members, likes, dislikes, and milestones in life? In order to support our loved ones as best we can, we dementia caregivers must strive to understand what a person’s identity is and how dementia affects it.
What Is Identity?
The American Psychological Association (APA) defines personal identity as “an individual’s sense of self defined by a set of physical, psychological, and interpersonal characteristics that is not wholly shared with any other person and a range of affiliations (e.g., ethnicity) and social roles.”
A person’s identity evolves throughout their lifetime as they determine what they value, make choices based on these values, form relationships, and take on various roles. Each of these components are internalized and combine to form one’s sense of self.
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 AD—describes identity as “essential me-ness.”
In the final stages of her mother’s illness, Magnusson 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.”
How Does Dementia Affect Identity?
The symptoms of dementia take a serious toll on patients’ abilities, memories and relationships. As these core aspects of one’s identity change, dementia patients may lose their sense of self-worth, feel depressed, or become withdrawn or agitated. Furthermore, memory loss and difficulties with communication often cause those living with AD to feel disoriented and isolated.
With many other medical conditions and disabilities, people are able to “update” their identity to accommodate these changes. Sadly, dementia patients lose this ability as their condition progresses and their cognitive symptoms worsen. In this way, long-standing aspects of a loved one’s identity are more likely remain intact, while newer components are either forgotten or fail to be integrated into their self-concept.
For the most enlightening take on how memory loss impacts identity, it is important that we try to understand the perspectives of people who are actually experiencing the effects.
The late Richard Taylor, Ph.D., psychologist, founding member of Dementia Alliance International, 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,” 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.”
How to Help Dementia Patients Feel Like Themselves
When it comes to preventing a loss of identity, dementia caregivers can offer invaluable support. 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. Furthermore, 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.”
An analysis of empirical research in the context of one psychological theory of “selfhood” suggests that “by promoting experiences of at-homeness, dignity, and being oneself related to others, we can help persons with advanced dementia experience themselves as valuable persons.” In practical terms, caregivers should strive to foster a sense of belonging and familiarity, infuse social interactions with respect, and treat each patient as their true self rather than a shell of who they used to be.
Lee-Fay Low, Ph.D., dementia specialist, professor in aging and health at the University of Sydney, and author of Live and Laugh with Dementia: the Essential Guide to Maximizing Quality of Life, writes about the importance of determining what is enjoyable, important and engaging for each patient.
Low suggests that people living with early stage dementia address the following questions. For those who are in the more advanced stages of dementia, she urges their caregivers to work with them to find the answers.
- Imagine a great day. What would that be like for you?
- Are there things you have always wanted to do but have not done yet?
- Who are the people you want to spend time with? How can you communicate with them more often?
- 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 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, agitation, frustration or even shame. 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, related dementias, 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 in how we see ourselves and how others see us.
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.
Sources: APA Dictionary of Psychology (https://dictionary.apa.org/identity); Sense of Self among Persons with Advanced Dementia (https://doi.org/10.15586/alzheimersdisease.2019.ch13)