Caregiving and Dementia: Connection and Loss

In honor of Alzheimer’s Disease Awareness, I have decided to share some of my personal experiences caring for people with dementia. Life has presented me with some irrefusable opportunities to learn new lessons lately, and I hope some might reach—and resonate with—overwhelmed caregivers. Connection is always paramount, after all.

First, though, it’s important to clarify some terms and definitions.

The specific symptoms of dementia and severity of those symptoms varies from case-to-case, person-to-person, and sometimes even day-to-day.

That’s certainly what I see with my loved ones who live with different forms of dementia. One of them has regressed deep into the past, forgetting most current relationships and the names of close beloveds, but still dances with the same zest as always. Another has their familiar personality and humor but needs assistance with things like putting on a belt and other tasks that require multiple steps to accomplish—even those that were once second-nature. My third relative with the disease has little to no short-term memory (requiring patience and sometimes redirection) but remembers who I am and countless details about the book I’m working on with no issue.

People are people—even when their brains are being attacked. In the end, we all want to feel loved, validated, valued, included, and productive.

The experience of “being with” someone who has dementia asks much of those who care about them, especially caregivers who provide around-the-clock support. When regular communication no longer suffices, the quality of our presence becomes even more significant. When someone can no longer understand verbal language, it’s likely they can still sense how it feels to be together. Is it peaceful? Enjoyable? Relaxing? Or perhaps stressful and upsetting?

Caregiving can be rewarding and taxing.

In the US:

  • 22% of America’s nearly 44 million caregivers provide care to someone with Alzheimer’s disease or dementia.
  • Most dementia caregivers support a relative (88%), usually a parent (42%), a spouse or partner (12%) or a parent-in-law (11%).
  • On average, dementia caregivers provide care for 28 hours per week. They help with more activities of daily living and instrumental activities of daily living, on average, than non-dementia caregivers.
  • A majority of dementia caregivers (67%) report that they do medical/nursing tasks, like administering injections and tube feedings, and catheter and colostomy care. Of those who perform medical/nursing tasks, a majority (53%) feels that they were not prepared to complete the task at hand while 14% feel that were adequately prepared.
  • Over half (57%) of dementia caregivers work full time and, on average, work 34.9 hours weekly.

(Home | The National Alliance for Caregiving)

Over this past summer, a relative with dementia came to stay in our home for periods of time. It deepened my appreciation for what it means to be a caregiver—a role I had already revered beforehand. Beyond the many beautiful moments of connection, there were also a few changes that felt challenging at times. The two most pronounced? The loss of solitude and spontaneity.

I hadn’t realized just how much I relish time alone until I no longer had much of it. I consider myself an “ambivert” in the sense that I have both extrovert and introvert qualities and I can adapt accordingly in most any situation. I enjoy being with people—even large groups when I’m leading workshops or giving talks—but I source rejuvenation mainly from quiet moments when I’m alone. It’s not as though my relative required my attention all the time, but their safety and needs were always on my mind.

Spontaneity was something life had been allowing me to rediscover as my kids grew older and more independent. Deciding, even last minute, to go for a hike, or go for a paddle on the lake, or to make dinner plans out was generally no big deal. When my relative entered the household, it required an additional pause and assessment for each plan I was considering. Sometimes the scales tipped in my favor. Sometimes they didn’t. It was just part of the deal.

Now, the purpose of sharing my realizations is not to complain, or to seek concern or pity. Actually, it’s the opposite. It’s to honor the endless responsibilities that caregivers take on and the sacrifices they make—much of which goes overlooked and underappreciated.

So, caregivers: I see you. I am even more grateful for you. And I recognize the rest of us need to do a better job supporting you so you can continue to support those in your care. We need to check in more often. We need to be more flexible and creative about making plans, working around your needs and limited availability. We need to build more community services for respite and inclusive gatherings. We need to understand and acknowledge everything you’re doing—and what you’re missing out on doing—all in the name of caregiving.

From my heart to yours,

Francesca Lynn Arnoldy

From the World Health Organization:

Signs and Symptoms

Dementia affects each person in a different way, depending upon the underlying causes, other health conditions and the person’s cognitive functioning before becoming ill. The signs and symptoms linked to dementia can be understood in three stages.

Early stage: the early stage of dementia is often overlooked because the onset is gradual. Common symptoms may include:

  • forgetfulness
  • losing track of the time
  • becoming lost in familiar places.

Middle stage: as dementia progresses to the middle stage, the signs and symptoms become clearer and may include:

  • becoming forgetful of recent events and people’s names
  • becoming confused while at home
  • having increasing difficulty with communication
  • needing help with personal care
  • experiencing behavior changes, including wandering and repeated questioning

Late stage: the late stage of dementia is one of near total dependence and inactivity. Memory disturbances are serious, and the physical signs and symptoms become more obvious and may include:

  • becoming unaware of the time and place
  • having difficulty recognizing relatives and friends
  • having an increasing need for assisted self-care
  • having difficulty walking
  • experiencing behavior changes that may escalate and include aggression.

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