Living with Dementia: The Importance of Retaining a Sense of Self
Are you worried about how you can support your loved one through dementia? One of the best things you can do is help them retain a sense of self. And here's why.
Living with Dementia: Understanding Dementia and its Effects on Your Loved One
The term “dementia” describes symptoms affecting a person’s memory, thinking, and social abilities that interfere with daily functioning. There are many different forms, each with its own distinct characteristics and symptoms, making living with dementia complex.
The effects of dementia on the brain and cognitive abilities can be profound. As the disease progresses, individuals may experience memory loss, confusion, difficulty communicating, and changes in mood and behaviour. These changes can be challenging, frustrating and difficult to manage.
Your consultant will clearly explain the diagnosis, including what to expect and the treatment options. But no one prepares you for how your loved one will feel and what will scare them the most about this condition.
So here it is. A dementia patient’s greatest concern is the loss of themselves—not just their identity but their independence, self-worth, and dignity. That’s why helping Mum or Dad retain a sense of self is going to be critical.
Why is Our Sense of Self so Important?
Our sense of self is crucial because it forms the foundation of our identity or persona and influences how we perceive and interact with the world. Developing a strong sense of self can lead to greater confidence, resilience, and a deeper understanding of our values and beliefs. It also plays a significant role in shaping our relationships and overall well-being.
Losing our sense of self causes withdrawal and isolation, which, in the case of people living with dementia, can significantly impact their mental and emotional health.
[There’s a fantastic book called “Alzheimer’s Disease”, edited by Thomas Wisniewski, MD and published by Codon Books in Brisbane. Chapter 13, written by Astrid Norberg, discusses the “Sense of Self among Persons with Advanced Dementia“. It talks you through the idea of selfhood and how it affects the concept of self-perception for those living with dementia. It also explores the idea of feeling at home (in your body and mind) and homelessness, which can often be triggered by symptoms as they manifest. Take some time and read the chapter. We think it will be very helpful.]
We know that isolation and loneliness can increase dementia risk by up to 60%, so it may be fair to also say that there is a risk for increased disease progression in sufferers who withdraw. Whether or not there is a basis for this assumption, in our view, continued interaction can only be a good thing.
So, why is your loved one withdrawing?
It can be hard to see a loved one withdraw, especially when they need you most. And especially if you feel your relationship has always been open, loving, and supportive. The truth is that it happens.
Imagine how it might feel to suddenly become aware that you aren’t sure where you are, who you are with and how you came to be there. That can be incredibly frightening. You’ll want to avoid being in that same position again.
Imagine that you are chatting away with a friend, and suddenly, they look at you concerned; they seem unable to understand you. That would be very confusing and frustrating. You’ll want to avoid being in that same position again.
Imagine forgetting how to clean your teeth and having a loved one help you. That would be very uncomfortable. Again, it’s something else to avoid.
So, why does your loved one withdraw? Because they may feel nervous, embarrassed, ashamed, or burdensome. To soothe those feelings, we must foster their sense of self and sense of home for as long as possible.
6 Ways to Help Your Loved One Retain a Sense of Self
Here are some tips and strategies that can help people living with dementia to retain their sense of self:
- Avoid setting them straight: Don’t correct, contradict, blame or insist. These will be seen as inflammatory or hurtful. Instead, reassure, reconsider, redirect and relax. All tips from Andrew E. Budson and Maureen O’Connor’s book Six Steps to Managing Alzheimer’s Disease and Dementia: A Guide for Families.
- Always support independence: Allowing people with dementia to retain their independence can help them feel more in control. It’s a difficult step, but standing back and providing support and assistance only when necessary can help.
- Help to maintain social connections: Staying connected with family and friends can help people with dementia feel valued and supported. Facilitate social activities and create ways for your loved one to interact, even on a limited basis.
- Engage in meaningful activities together: Participating in meaningful activities with your loved one, such as gardening, cooking, or listening to music, can help them feel a sense of purpose and accomplishment. That’s easy to forget when we focus on caring for someone, so don’t beat yourself up. Instead, take this as an opportunity to promote independence through sharing activities.
- Take time to reminisce: Encourage your loved one to talk about their experiences and memories. It can help them feel more connected to their past selves and maintain a sense of identity. You’d also be surprised at what you pick up about who you see as Mum or Dad—they lived a whole life before they had you!
- Let them be who they were born to be: Maintain your relationship paradigm. Let Mum have moments where she can be Mum again, and Dad be Dad. Despite everything you are both going through, maintaining your relationship is essential.
In all of your efforts, please remain patient, compassionate, and understanding while providing a supportive and safe environment. There’s no doubt that this will be tough on both of you. But we promise that those moments of clarity will be much sweeter if everyone has a sense of self.
Living with Dementia: How Home Instead Ascot, Camberley and Wokingham can help
When you receive a dementia diagnosis and you are researching your care options, it is critical to consider how your care provider can help you in all aspects of living with dementia.
Your care provision should cater to your loved one’s independence, dignity, and self-worth—all the senses of our true selves.
At Home Instead, that’s exactly what we promote among our accredited dementia care staff. We want to support your loved one in maintaining healthy relationships, building new memories and easing their journey through their condition.
We provide all of the clinical and home care (and live-in care) support you would expect alongside your treatment plan, and we can provide companionship. That holistic approach helps your loved one manage their symptoms in a relaxed and comfortable environment. The place they call home and with a sense of home.