Navigating the Maze of Dementia Caregiving: A Personal and Professional Journey
Dementia is a global health crisis that touches the lives of millions of people, regardless of their gender, race, or socioeconomic status. As the population of baby boomers advances into their twilight years, we are living longer than ever, often despite chronic illnesses and cognitive impairments. The world witnessed a historical shift in 2018 when the number of older adults surpassed children under the age of 5 for the first time. By 2035, it is projected that people aged 65 and above will outnumber everyone under 18.
As of 2022, more than six million families have grappled with the harsh realities of Alzheimer’s disease and related dementias. Public policy relies heavily on unpaid family or friends to shoulder the caregiving load, a critical measure to avoid overwhelming the healthcare system. With dementia's relentless progression and patients often requiring complete dependency care for anywhere from 4 to 20 years, our society has no viable alternative. We simply couldn't function without the tireless efforts of family caregivers.
As the public becomes more aware of dementia, and as high-profile figures such as Bruce Willis bring a "public face" to the disease, we find ourselves sorely lacking in support mechanisms for the very individuals who form the backbone of our healthcare system. Looking after a loved one with dementia can be a chaotic, heartbreaking ordeal. It's a jarring juxtaposition of grieving for the person you once knew while simultaneously bracing yourself for the disease's unpredictable trajectory.
Let's face it - dementia is no longer the proverbial elephant in the room. Almost certainly, this disease will impact us all in some form or another, if it hasn’t already. With declining birthrates, delayed parenthood, and a rise in multi-generational households, dementia is reaching younger caregivers with varying experiences, assuring that most of us will eventually be touched by this role. Far too often, however, family caregivers fail to seek help until they are in a state of complete crisis. We cannot allow this to continue.
As the director of the ENRICH Lab, my experience with caregiving isn't just academic - it's personal. My mother was diagnosed with dementia when I was only 14 – dementia was the norm in my life until I was 31. I spent my formative years watching as she slowly lost her ability to walk, as she struggled to express her words, and further decline more and more into an abyss that left her bedbound and alive via artificial nutrition. I watched my father dedicate his life to her care, a commitment that eroded his health. The toll of the stress he endured led to a stage IV cancer diagnosis. When he needed care himself, I found myself caring for them both.
I was leading my family blindly, trying to figure it out as I went. Every hospitalization discharge forced me into a new job position for which I had no credentials. I was doing infusions, administering feedings, bathing, washing, managing pressure wounds, physical therapy, financial management, and advocating when no one would listen. Just like everyone else, it was “education on the fly.” At the same time, we were also navigating the deeply personal conflicts related to our cultural and religious values, about my father’s wishes, and about the ethics of keeping my mother alive. There was no doctor, no specialist, no one to turn to for help and advice. Caregiving, which had so fundamentally become my identity, also destroyed me in a myriad of ways, and I found myself lost in a purposeless abyss once that role had concluded for me when both of my parents died merely five months apart from each other.
My father never sought help. Was he unaware of the resources available, or did his cultural background equate seeking support with weakness? I'll never know. But as an emerging expert in this field, I was perplexed by my own reluctance to seek help even when I felt overwhelmed and near a breaking point. My experience mirrors that of millions of others.
Our society tends to label dementia caregivers as "unsung heroes," but we also saddle them with the responsibility of finding their own support. We must recognize that dementia caregiving is not a one-size-fits-all scenario. It's a complex and ever-changing mix of experiences, emotions, thoughts, and behaviors influenced by our backgrounds, interactions, and the world around us.
To better understand these complexities, our lab has been conducting research informed by the voices of dementia care, including a wide range of professionals and caregivers themselves. Our goal was to understand preferences and barriers to service use, and we seek to bridge the gap between caregivers' needs and the creation of a referral pipeline to services tailored specifically for them.
We found several barriers that prevent caregivers from using support services. This list is by no means exhaustive, but it’s a wake-up call that we need to take a multi-faceted approach with cross-disciplinary investment to address these barriers to enhance caregivers’ ability to get the support they need.
Awareness: Many caregivers are unaware of the supportive resources available to them. This includes respite care, counseling, support groups, and education programs.
Flexibility: Caregivers need services that adapt to their unique needs and schedules.
Information Overload: It can be overwhelming to sift through the vast amount of information available online.
Cost: The financial burden of caregiving is already significant; additional costs for support services can be prohibitive.
Institutional Barriers: These can include the lack of culturally sensitive services, stigma surrounding dementia, and overwhelming bureaucracy. Navigating an extremely complex, siloed, healthcare system, coupled with medical mistrust, is a hugely complex stressor.
Accessibility: Sometimes, the exact service a caregiver needs simply doesn't exist. If a caregiver has a medical emergency, who do you call to care for the care-recipient?
Even when caregivers are aware of services, various barriers may prevent their usage. Feelings of guilt or shame, concerns about cost and quality, stigma, mistrust, and logistical issues can all deter caregivers. We need to navigate the labyrinthine processes of Medicaid and Medicare and ensure doctors have the training necessary to support caregivers.
Emerging technologies, specifically AI, hold significant potential to revolutionize dementia caregiving. AI-powered solutions can provide real-time support and guidance to caregivers and could also enhance access to supportive services. By providing caregivers with information on available services and connecting them to resources and support groups, AI could alleviate some of the stress and isolation caregivers often experience. However, it's crucial to ensure these AI solutions are accessible, culturally sensitive, and developed in collaboration with caregivers and individuals with dementia. We must design these tools with the needs of diverse communities in mind.
In conclusion, the labyrinth of dementia caregiving is a shared journey, fraught with challenges and complexities. From understanding the barriers caregivers face to harnessing the potential of AI, we have a duty to support these unsung heroes better. The key to this lies in increased awareness, flexible and accessible services, streamlined processes, and cutting-edge technology designed in collaboration with caregivers and dementia patients. The task is monumental, but it's our collective responsibility to ensure that caregivers don't navigate this maze alone. By addressing these issues, we can create a more compassionate, effective framework for dementia care, one that respects the dignity of patients while supporting the invaluable individuals caring for them.