I’ve just been diagnosed with early onset Alzheimer’s disease. So many decisions to make but I know my family and friends will be supportive. Surely society will understand that I’m still myself and they will allow me to continue living my life in the best way possible.
The statement above is what we wish would happen when a person is diagnosed with early onset Alzheimer’s disease, but it is often not the case. Too often, the person with the disease is immediately treated differently. The person’s identity is stripped away and replaced with the label of their diagnosis and symptoms. People with early onset Alzheimer’s disease are often described as “victim” or “sufferer”, and these descriptions render them as “less than”. In the words of Dr. G. Allen Power, “We are quick to assume that people’s capabilities are less than they are, and we treat them accordingly. A focus on deficits makes us quick to position people as incapable and we disempower them.”
Early onset Alzheimer’s disease does not cause someone to stop living their life nor does it render them useless in society. Each person is a unique individual with their own personality, history, relationships, memories, thoughts, talents, ideas, roles within families and communities, cultures, beliefs, and occupations. Each individual has their own unique heart and soul.
“We’re still here. We still have ideas and can express them. Just be patient and listen to us. We are real people! There is a difference between the people and the disease. The disease is what makes us different.” –Robert Simpson
It’s time to shift perspectives about those living with early onset Alzheimer’s disease. Recognize their individuality and honor their history. This allows them to maintain their identity instead of being defined by the disease. How can we as care partners, family members, friends, and healthcare professionals change our perspectives? We must move beyond placing misguided judgements and limitations on those living with the disease. Our goals should be to “preserve identity, celebrate personhood, and create meaning in the moment.” (1. Power, Dementia Beyond Disease, 42.)
Below are ten (10) steps to enhance the identity of those living with early onset Alzheimer’s disease:
- Focus on the whole person, even when their experiences are shifting as a result of the disease.
- Talk to the person instead of about the person. They are not just a list of symptoms and losses.
- View life from their perspective so you can understand how to best support them.
- Allow them to be involved in their life.
- Engage in conversations with them about their feelings, abilities, concerns, fears, and desires.
- Listen to them unconditionally, without interruption. Listen with your heart and soul.
- Live in the current moment instead of focusing on the past.
- Be patient and loving.
- Keep in mind that care and support is not a “one size fits all”. Honor their unique characteristics, hobbies, interests, and desires.
- Provide an environment of security and respect.
We invite you to read the statements titled “Our Beliefs”, which outlines our philosophy for those living with early onset Alzheimer’s disease as well as their care partners and families.
Join us next week as we continue the discussion of how to honor and respect those living with early onset Alzheimer’s disease with our blog post titled “Reframing for Respect: Words that Heal”.
- Power, Allen G. Dementia Beyond Disease (Baltimore: Health Professionals Press, Inc., 2014), 42.