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Listening to the experiences of dementia patients can help improve caregiving

I arrived to see Mrs. Davis this morning with a giant cup of coffee in my hand, praying that the caffeine would cut through my morning fog. Mrs. Davis welcomed me with a big smile and high spirits.

"Geraldine!" she said, "It's great to see you. How was mass this morning?"

My name is Renée, not Geraldine. I had not been to mass that morning. I had been to Starbucks. What is it like to be in her mind? I wondered. I know from Mrs. Davis's care team that she often starts the day in good spirits. But as the day goes on, darker thoughts creep into Mrs. Davis's reality and evenings can scare her. Some days, she thinks I am Geraldine. Some days, she knows I am Renée. And some days she has no idea who I am.

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Fortunately, there are accounts of dementia from people who have experienced it firsthand, and which can help inform others and improve caregiving:

Rick Phelps was diagnosed with Early Onset Alzheimer's Disease in June, 2010. He created Memory People, an online dementia and memory impairment group that supports over 16,000 individuals. Phelps has shared his struggles: He spends time with his granddaughter, but knows one day he may not recognize her. He is frustrated that, as of now, there is no cure for Alzheimer's.

Dr. Stephen Hume, who was diagnosed with Alzheimer's disease in 2007 at the age of 60, has also shared his experience with the disease. For most of his life, Dr. Hume had considered himself a "creative holistic thinker," but his disease made it hard to hold complex concepts in his mind. His thinking became much more linear. Eventually, Dr. Hume says, he was able to look at forgetting as a part of the disease that was actually a gift. Every time he lost a skill or a memory, he had a period of distress when he realized something was slipping away, and then the forgetting brought him acceptance, making life easier for him.

A book called The Best Friends Approach to Alzheimer's Care by Virginia Bell and David Troxel has been influential for caregivers, including Marie Marley, a seasoned Alzheimer's caregiver who has written about caregiving since 2011. She says the book took her through the various emotions the dementia sufferer experiences: loss, isolation, sadness, worry, anxiety, frustration, fear, paranoia and anger. The passage that struck her most was about embarrassment. Bell and Troxel compare the embarrassment of dementia to that feeling of being in a classroom, not knowing the answer and having the teacher call your name.

Bell and Troxel created the Dementia Bill of Rights based on their knowledge of how dementia feels. The document outlines that every person diagnosed with Alzheimer's disease or other dementia deserves:

To be informed of one's diagnosis.

To have appropriate, ongoing medical care.

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To be treated as an adult, listened to, and afforded respect for one's feelings and point of view.

To be with individuals who know one's life story, including cultural and spiritual traditions.

To experience meaningful engagement throughout the day.

To live in a safe and stimulating environment.

To be outdoors on a regular basis.

To be free from psychotropic medications whenever possible.

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To have welcomed physical contact, including hugging, caressing and hand-holding.

To be an advocate for oneself and others.

To be part of a local, global, or online community.

To have care partners well trained in dementia care.

The Dementia Bill of Rights provides a framework for those of us providing care to people with dementia. These rights seem obvious, yet are often not met within the restraints of our current care models.

Recently, one of our staff members forwarded me this video: "Dementia from the inside" created by the Social Care Institute for Excellence. The video takes you inside the daily thoughts of someone with memory loss. It moved me, and deepened my empathy for my loved ones and clients with dementia.

There is a lot of work to be done before every person with memory loss lives within the framework outlined in the Dementia Bill of Rights. I work to improve every day, and I hope to see a cure for memory loss in my lifetime. Until that happens, I will say I went to morning mass. I will agree to be Geraldine for a few minutes. I will honour Mrs. Davis's reality, and the realities of all my clients, as the rich and meaningful worlds that they are.

Renée Henriques is a registered nurse and the owner and managing director of ComForCare Home Care Toronto, providing personal support services to seniors.

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