I was named after my grandmother, and on those hard days when dementia ravished her mind, it was our name that tethered her to the world she was gradually departing.
Ever since I was small, we always called my grandma on Sundays. Once they placed her in the nursing home, those calls became harder and harder. First, my mom and her sister had to move my grandmother from Mexico to England so my aunt could care for her. My grandmother was starting to struggle with daily tasks. Once in England, my aunt suffered an aneurysm and died. First, my mom placed my grandmother in a nursing home for people who were aging, mentally competent, and just needed additional support. Unfortunately, due to her dementia, she would have to be moved to a nursing home that specialized in dementia care.
Now, on Sundays, I would wait in the other room with bated breath, listening to my mother on the phone. What kind of call would it be? Would their conversation be my mother updating my grandmother on the week’s happenings and vice versa? Would they break out into one of their arguments about life decisions? Would I hear the sadness in my mom's voice as she repeated who she was?
"Your daughter."
"Yes, you have a daughter."
"Lydia."
"Your daughter."
The conversation would repeat until I heard my mother say, "Margaret."
I would take the phone from my mother, and my conversation with my grandmother wouldn't be about me updating her on my teenage life.
"Hi grandma, it's Margaret."
"You're name is Margaret!" You could hear her light up on the other end.
"What's your middle name?"
I would tell her.
"That's my middle name too!"
So, my grandmother and I would talk about how we had the same name. She repeatedly asked me to share my name, and her excited reply was that that was her name, too.
On those vacant days, her name was her only tether to the world; it was something she knew in a current of unknown and unfamiliar. Her mind had checked out and left no forwarding address. Its visits were always sporadic and unpredictable. Sometimes, it would return with all her worldly possessions, memories, and experiences. Other times, it would come with pieces—maybe an overnight bag. Perhaps a bag of random things that seemed out of place and useless. My name, no matter what day, was the anchor. It was something she carried her entire life. It was something she knew in her soul. It was the one thing that hadn't left her yet.
While aging is a natural part of life, our society often prioritizes youth while overlooking the wisdom and value of our elders. The fear of aging is pervasive, accompanied by the unsettling prospect of becoming a burden on loved ones. Drawing from my experience as a thanatologist specializing in death, dying, and bereavement, I regularly engage with individuals, some of whom assume the role of caretaker, struggling with the grief of aging parents.
Dementia is a devastating illness for the person and their loved ones. However, many people do not understand exactly what dementia is, and the toll it takes on its grieving caretakers.
What is Dementia
Currently, over 55 million individuals globally have dementia, with over 60% living in low- and middle-income nations. 10 million new cases are reported worldwide each year.
Dementia is not one specific disease; it is a term to encapsulate the impaired ability to think, make decisions, and remember that impacts daily activities.
Types of Dementia
Alzheimer’s disease: the hallmark symptom is difficulty recalling recent events, such as conversations from minutes or hours earlier, while trouble remembering older memories develops later in the disease. Other issues, such as problems with walking, speaking, or personality changes, also emerge later.
Vascular dementia: Approximately 10 percent of dementia cases are associated with strokes or other problems related to blood flow to the brain. Diabetes, high blood pressure, and high cholesterol are also risk factors. Symptoms differ based on the affected brain area and the extent of damage. The disease advances in a step-wise manner, with symptoms abruptly worsening as the individual experiences more strokes or mini-strokes.
Lewy body dementia: Alongside common symptoms like memory loss, individuals with this form of dementia may experience movement or balance issues, such as stiffness or trembling. Many also face changes in alertness, including daytime sleepiness, confusion, or staring spells. Additionally, they may struggle with nighttime sleep or have visual hallucinations, seeing people, objects, or shapes that are not actually present.
Frontal lobe dementia: typically causes changes in personality and behavior due to the specific part of the brain it affects. Individuals with this condition might act inappropriately or embarrass themselves. For example, a person who was previously cautious may start making offensive comments and neglecting responsibilities at home or work. Language skills, such as speaking or understanding, may also be difficult.
Mixed dementia: Sometimes, more than one type of dementia can coexist in the brain, particularly in individuals aged 80 and older. For instance, a person might have both Alzheimer’s disease and vascular dementia. Identifying mixed dementia can be challenging because the symptoms of one type may be more noticeable or may overlap with those of another type. The progression of the disease may also be quicker than if only one type of dementia were present.
Reversible causes: Individuals with dementia might have a reversible underlying cause, such as a medication side effect, increased brain pressure, vitamin deficiency, or thyroid hormone imbalance. Healthcare providers should screen patients showing signs of dementia for these reversible causes.
In the 80s, according to MRI, my grandmother’s dementia, mirrored multiple sclerosis, however, in a different part of her brain.
Impacts of Dementia
“Currently, more than 55 million people have dementia worldwide, over 60% of whom live in low-and middle-income countries. Every year, there are nearly 10 million new cases.” World Health Organization
Several types of grief, including nonfinite losses, anticipatory grief, ambiguous loss, and dementia grief, impact individuals with dementia and their community. Furthermore, dementia affects the physical and emotional well-being of those experiencing and caregiving.
Nonfinite losses are the type of loss we experience over time. With dementia, it is the loss of the ability to do things the person once could, such as drive, make appointments, and clean. It can also be due to health-related conditions, such as being able to dress or cook.
Anticipatory grief extends beyond the anticipation of death; it also encompasses sequential non-death losses, such as the loss of bodily functions, capabilities, social circles, and a decline in activities and plans1.
Ambiguous loss, according to Boss (2002)2, is an unclear loss, traumatic loss and happens when either a loved one is physically present and mentally absent or physically absent and mentally absent.
Dementia grief is composed of compound serial life losses, ambiguity, and receding of the known self3.
Compounded serial losses4 accumulate both in number and severity. Initially, individuals may experience memory and communication deficits alongside withdrawal from activities. Over time, more advanced losses, including decreased cooking, driving, and dressing capability, become apparent. These numerous and cyclical losses comprise a significant aspect of the extended trajectory of the disease process, leading family members to confront countless small and large losses.
Ambiguity5 arises from the deepening alterations in cognition and states of consciousness observed in individuals with dementia. Notably, the loss of identifiable personality traits and the ability to recall personal memories contribute to the ambiguity experienced by family members. Stems from the challenge of recognizing the person with dementia as the same individual they once knew or encountering difficulties in accessing their psychological presence.
The concept of receding of the known self6 refers to the observable changes in individuals with dementia, encompassing alterations in their identifying personality traits, memories, and abilities.
75% of people with dementia are being cared for by friends and family.
Outside of grief, caretakers can lose themselves, and their identity can become that of the caregiver. Caretakers often feel isolated from others. Caregivers also experience additional financial stressors related to care costs. Caregivers are also at greater risk of developing and experiencing anxiety, depression, and poorer quality of life.
Caregivers encounter numerous challenges as they juggle caregiving with other responsibilities, such as raising children, pursuing careers, and maintaining relationships. This balancing act puts them at a higher risk for burden, stress, depression, and various other health complications. Caregivers often feel burdened, which makes them feel overwhelmed and mentally strained.
Dementia is a heartbreaking illness to experience and witness. It takes its toll on everyone. "Relic" and "The Taking of Deborah Logan" illustrate the harrowing experience for the individual, family, and community.
Caretaker Mental Health Supports
Studies have shown that caregivers benefit from:
Psychoeducation: Caregivers learn adaptive skills for managing caregiving demands and stress through structured small group sessions. Topics include dementia information, community services, self-care, communication improvement, and managing problem behaviors, with additional training in anger management, thought modification, and pleasant event scheduling.
Counseling and Psychotherapy: Trained professionals provide individual and family counseling or psychotherapy to help caregivers manage stress and treat issues such as depression, especially for those with clinical mental health problems.
Multicomponent Interventions: These interventions combine strategies, such as education, skills training, counseling, problem-solving, support groups, home modification, and health monitoring, to comprehensively address caregiver needs and enhance treatment effectiveness.
Mindfulness-Based Interventions: Caregivers are trained in mindfulness techniques, primarily Mindfulness-Based Stress Reduction, to focus on the present moment nonjudgmentally, to relieve suffering and improve overall well-being.
Providers and support teams have incorporated technology to make this easier for caregivers, including online learning, web-based virtual calls, and telephone calls. They also offer translator services to help non-English speakers receive support.
Caregivers are not alone. They have access to numerous resources and support systems in their community, including support groups, counseling services, and educational programs. Additionally, there are programs for their loved ones with dementia, such as respite care, day programs, and community services.
Supporting a Loved One with Dementia
There is no point in reinviting the wheel; there are agencies dedicated to supporting people with dementia and their loved ones.
Check out these websites full of information for ways to support your loved one.
You can also:
Talk to your care provider
Your loved one’s care provider or care team (you might need a release of information to talk to them)
Search local agencies that provide support for dementia
Check with your local hospital and community mental health agency for programs
Final Thoughts
Dementia is a devastating disease that impacts everyone it touches. Those grappling with dementia, as well as their loved ones, family, and friends, can find solace in the various forms of support available to them. These include psychoeducation, counseling, psychotherapy, comprehensive interventions, and mindfulness-based approaches.
Furthermore, initiatives such as respite care, day programs, and community services play a crucial role in offering much-needed relief and support to the caregivers of individuals with dementia.
Although dementia presents significant emotional and practical challenges, it's important to recognize that there is hope and assistance available for those impacted by this heartbreaking illness.
Coming up:
Part 2: Fading Memories: A cinematic exploration of dementia: Relic and The Taking of Deborah Logan
Part 2: Man vs Bear: The Need for Female Storytellers
Shadowed Thirst: Unveiling the Vampire Within
Meagher, D. K., & Balk, D. E. (Eds.). (2013). Handbook of Thanatology: The Essential Body of Knowledge for the Study of Death, Dying and Bereavement. Routledge.
Boss, P. G. (2002). Ambiguous loss: Working with families of the missing*. Family Process, 41(1), 14–17. https://doi.org/10.1111/j.1545-5300.2002.40102000014.x
Blandin, K., & Pepin, R. (2017). Dementia Grief: A Theoretical Model of a Unique Grief Experience. Dementia (London), 16(1), 67–78. doi:10.1177/1471301215581081.
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