Dementia Care Planning is a Family Affair
by Dr. Macie Smith, CEO, Diversified Training Consultants Group
Worldwide, more than 47 million people are living with some form of dementia. Alzheimer’s disease accounts for approximately 60% of these cases. Currently, more than 5.4 million Americans are living with Alzheimer’s disease. Approximately 38% are over the age of 85, 59% are over the age of 65 and 3.2 million are women.1 According to the Alzheimer’s Association women are at higher risk of developing Alzheimer’s disease and they are more likely to be caregivers.
Studies support that over 15 mil- lion caregivers are providing more than 18 billion hours of unpaid care for persons living with dementia.1 These statistics support that family caregiving is one of the most crucial concerns facing social policy to date.
Because we know that the majority of persons living with dementia are being cared for by family members or loved ones in their community, there is a desperate need for community dementia education programs and comprehensive care.2 When we think of comprehensive care we think of physicians collaborating with other physicians to support the patient’s care in a dementia-specific holistic manner. But realistically speaking, all of the patient’s physicians may not converse to discuss that patient’s dementia-capable care.
This fragmented approach to caring for persons with dementia is not only unproductive; it could have major implications for the person living with dementia and their caregivers. Family caregivers have reported high levels of stress associated with family caregiving.3 This factor alone can lead to increased healthcare costs for family caregivers, leaving their loved one with dementia at risk for institutionalized placement.
Emerging research purports that there is not a cure for Alzheimer’s, the most common type of dementia; however, there are medications that could manage the symptoms, for a time, such as memory loss; confusion; mood changes; disorientation; lack of decision making skills; and compulsivity. As the disease progresses, however, so does to the likelihood that these symptoms could worsen with the bulk of the responsibility to manage the behaviors resting upon the family caregivers and other members of the family.2
Therefore, there is a growing need for dementia-competent education that is practical, applicable, and relatable; and extends beyond the walls of the doctor’s office. Before January 2017, there was no financial incentive for physicians to spend a little more time appropriately assessing an older adult experiencing cognitive loss. What the medical profession is now realizing is that persons living with an irreversible dementia are depending, will depend, or has depended on someone to manage and coordinate their care as the condition progresses. From managing medical visits, medications, in-home care, and social engagement, natural support systems are at the core of optimal care planning.
Natural support systems may include spouses, daughters, daughters-in-law, sons, neighbors, church members, and friends. As the number of persons living with dementia continues to rise, so does the number of family and non-professional caregivers. There seems to be an immense need for practical information and education about the dementia trajectory and what resources are available to help ease or alleviate the amount of stress the caregiver experiences and the person living with dementia.
As a result of this budding crisis, physician practices are now faced with the responsibility of managing the care of persons living with dementia and their caregiver(s); in essence, at least two patients now exist. As it stands, general practitioners are not abreast of the many home and community based services that now exist to aid in the person’s ability to safely remain in their natural environment for as long as feasibly possible (i.e. in-home care aide, respite, environmental modification, etc.).
Therefore, physician practices must make a conscious effort to seek out information on education that encompasses non-pharmacological strategies, since the medical model is only a small piece of the puzzle. Physicians also must learn more about the viable home and community based options that are designed to assist the aging population to age-in-place safely. A nursing home is not the only option and in some cases it is not an option at all when considering the financial limitations.
Persons living with a progressive form of dementia must have comprehensive systems management for optimal care. It is because of this unique need that professional Geriatric Care Management is now considered a mainstream service that is an integral component in providing competent dementia-capable care. Medical practices need social workers and community health workers, alike, now more than ever. In order to manage the amount of care and support that persons living with dementia require, an ongoing dementia-specific care plan is needed with the support of clinical professionals, community practitioners, and natural support systems. Shared decision making is the best remedy possible. Although there is not a cure for Alzheimer’s disease, there is care.
1 – Alzheimer’s Association. (2017). 2017 Alzheimer’s disease facts
2 – Brodaty, H., & Donkin, M. (2009). Family caregivers of people
with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228.
3 – AARP. (2015). The new faces of caregivers.