Planning for a meaningful visit with a friend or family member with dementia is a win-win idea. As a Neurologist, I encounter families dealing with loved-ones in various stages of dementia. The degree of compassion and creativity that caregivers are capable of bestowing often leaves me in awe. In this blog, I will share with you my personal experience with my grandmother and some interesting ideas shared with me by my patients and their caregivers.
My first experience with dementia was with my grandmother. When I was in college, she became forgetful and often confused. She was diagnosed with Alzheimer's Disease and my grandfather dedicated his days and nights to care for her. My grandmother entered a skilled care facility in the later stages of dementia. My grandfather continued to spend every day visiting her. My first sight of my grandmother in her skilled care facility was devastating to me. She was sluggishly sitting in her chair, had no idea who I was, and failed to acknowledge my presence. You would think as a medical student that I would have been prepared but I was frozen in my despair. My grandfather took the lead and began to explain who I was and what was happening in my life...still no signs of recognition in her eyes. I was so sad. I wanted out but I didn't want to desert my grandfather. What happened next may have clinched my decision to become a Neurologist. My grandfather put a tape in the tape player and turned up the volume. Out blasted "Chantilly Lace" and my grandmother came alive. She enthusiastically rose from her chair and danced with a wide smile while holding my hand. This is my last memory of my grandmother; a happy song, warm hands, and joyful dance.
There are a lot of people that find themselves caught in a situation like mine, where you so desperately want to connect but you're at a loss on how to break through. After researching, consulting with patients, and drawing from my own experiences, I have come up with five ideas to consider when visiting a friend or family member with dementia.
1. Understand their dementia. Alzheimer's Disease and most age-related dementia's envelope a range of symptoms related to memory, thinking, and behavior. Each person's experience with dementia is unique but there are some predictive symptoms. Understanding these symptoms helps create a purposeful and compassionate environment.
2. Try to visit between morning and early afternoon. Sundowning is a condition that leads to increased confusion towards nightfall when there is less sensory stimulation.
3. Watch for non-verbal cues. People with dementia can experience agitation. During the early stages, agitation is often the result of the feeling of incompetence or embarrassment. During the later stages, the dementia patient could be experiencing sundowning, delusions, paranoia, and/or hallucinations.
4. Speak to their caregiver before you visit. They are often a treasure trove of creative ideas and will prepare you for what you can expect.
5. Appeal to their senses and tap into their long-term memory.
I encourage thoughtful preparation for your visits and wish you many joyful moments during a very challenging time for you and your friends and family.
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By Sarah McCarren, RN, MSN, CPNP
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