When families hear that a loved one has been diagnosed with Alzheimer’s disease or dementia, they often respond with feelings of despair that their beloved relative or friend will never be the same again.
These are perfectly normal reactions, but as a trained Alzheimer’s disease or dementia specialist, I believe that the person they’ve always known is still there to love and celebrate. The key to understanding that is recognizing the significant difference between the person and the disease, and understanding which of the patient’s behaviour is related to the disease process.
Although there might be some outward changes in your loved one’s demeanour, they’re still capable of feeling and expressing emotions very deeply. They’re also able to develop, maintain, and enjoy caring relationships when given the right kind of support.
This is at the very core of protecting the personhood of your loved one. Taking this positive approach to dementia care involves not losing sight of who your loved one truly is. Doing so will make the Alzheimer’s journey much easier for not only the patient, but also for you and your family.
The importance of protecting your loved one’s personhood
Much of the foundation on which today’s approach to dementia care is built is based on the research of Tom Kitwood, a clinician and researcher from Great Britain. He coined the term “person-centred care” to describe his philosophy of protecting the patient’s personhood, which he defined as involving support, respect, and trust given from one person to another in a caring relationship.
Mr. Kitwood’s insights helps us recognize that a person with dementia is an individual with:
- A unique life story
- The capacity for interpersonal relationships
- Significant others/family who care about them
- A need for a supportive environment
- Many remaining strengths and abilities
Understanding both sides of the person/dementia equation helps us form care plans that transform this condition into a positive experience. This was the case with Anna*, a much-loved family member who had received what was perceived by her family as a troubling diagnosis.
Anna: a case study in transformative dementia care
Several years ago, we had the pleasure of meeting Anna. She had been diagnosed with dementia and had a history of aggressive behavioural problems. Anna’s family doctor had recommended that she be placed in a locked unit due to her aggressive behavior.
Seeking another opinion, Anna’s family requested we take her on as a client. We first met with the family to discuss their needs and concerns, as well as fulfill our primary goal: to understand who Anna was by uncovering the person behind the disease.
In terms of Anna’s life story, we learned that:
- She was a retired teacher who spent her entire professional life devoted to her work, but who was strict with her students in order to have them achieve their very best
- Anna was a very proud and independent woman who was very resistant to care, especially from medical professionals.
- She worked with a teaching assistant during her career with whom she got along very well
Using this information, we were able to develop a care plan designed to keep Anna happy and productive by focusing on the routines and activities that brought her the most joy and fulfillment.
Here’s how we framed Anna’s care plan:
- We introduced her caregiver as her “teaching assistant”
- The teaching assistant’s duties included helping Anna prepare class material, write papers, and correct student homework
- The assistant prepared lunch for Anna, and they would eat together while discussing the “students”
- In the early afternoon, they walked to a familiar educational environment created to help Anna direct her focus
- After school, they stopped at the local coffee shop to have a coffee and chat with the “other teachers” (over time, the other patrons would get to know Anna and her assistant, and engage with her with courtesy and enthusiasm)
- At the end of the day, Anna could rest while looking forward to another school day, or enjoy the weekend after a busy week with her students
Since we started working with Anna, she stopped exhibiting aggressive behavior and has enjoyed her life once again as a teacher. However, the most important result of our work is that Anna is now happy, content, and fulfilled while getting the care she requires. Her new routine also brought peace of mind to her family, who no longer needed to worry about Anna’s well-being, or the risk of her having angry outbursts at a caregiver.
In short, Anna’s able to continue enjoying life with support that focuses on who she really is, instead of behaviour that’s related to her diagnosis. She was able to enjoy a fulfilled life, and entertain her family with stories about her students, transforming her condition into an experience that brought a sense of joy to others as well.
Preserving control, dignity, and independence
When speaking to families, I often encourage them to think about what they would want a caregiver to know about them in the event they were diagnosed with dementia and required support. More often than not, their lists include:
- Timing for meals
- Their favourite food
- Music that brings them joy
- Bathing and hygiene needs
- Their general disposition (e.g. moods, personality type, etc.)
- Personal style
- Routine social gatherings
- Books, movies, and television programs they enjoy
- The need for control and the dignity that comes with independence
The last point is especially crucial, as it serves as a reminder that no matter how far along the person is in their journey, there will always be a need for a certain amount of control, as well as the dignity that goes hand-in-hand with living independently for as long as possible.
At CareHop, preserving your loved one’s desire to live independently is at the heart of everything we do. We understand that each of our clients is a person who needs to be protected, celebrated, and cared for under any and all circumstances. Preserving their personhood is a large part to getting started along this new journey with joy and fulfillment.
I’m always happy to answer any questions you have about our empathetic approach to elder care. Please reach out to me or anyone on my team anytime.
*Name and other details changed to protect the privacy of our client