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Alzheimer’s and Family Caregivers: A Proactive Approach to Support

By Troy Christian Andersen, Ph.D. Candidate, University of Utah College of Social Work, JA Hartford Doctoral Fellow in Geriatric Social Work

Troy Andersen

In the U.S., our average life expectancy has increased by nearly 30 years over a 100 year period, resulting in an unprecedented expansion of the 65 and older population. This demographic shift has yielded an increase in long-term medical illnesses, such as dementia, and a greater demand for caregivers. Alzheimer’s disease is the leading cause of dementia in those 65 and older, accounting for approximately 70% of the cases. Currently in the U.S., Alzheimer’s affects approximately 5.3 million people, is the 5th leading cause of death in those over 65, and is the only cause of death that is significantly on the rise. With $172 billion in annual costs associated with the disease, care for individuals with Alzheimer’s is very difficult and expensive, exacting a tremendous toll on our nation’s 10.9 million unpaid care providers, 94% of whom are family members.

As a Ph.D. candidate at the University of Utah College of Social Work, my dissertation research has focused on addressing the care-related issues of this population. Through my clinical practice at the University of Utah’s Center for Alzheimer’s Care, Imaging and Research, I am working with and evaluating the Center’s Proactive Dementia Care (PDC) treatment model. Successfully caring for an individual with dementia requires a unique set of knowledge and skills, so the goal of PDC is to provide immediate education and proactive care planning to individuals with dementia and their families.

Progressive dementing diseases – such as Alzheimer’s – have foreseeable psychological and social complications that often remain unaddressed until late in the disease process. Progressive dementias significantly alter a person’s ability to function and communicate or relate to others. Individuals with these diseases often require 24 hour-a-day, seven day-a-week supervision and are more vulnerable to a wide range of increased safety hazards. Rarely are family caregivers prepared for these new challenges. But, with early interventions such as PDC, family members or other care providers can plan for these changes and to learn about various available support systems. Proactive engagement also allows for maximum input from the individual with dementia. Healthy lifestyle changes, participation in advanced decision-making, and completion of appropriate legal documents optimizes the benefits and prevents the necessity of costly interventions later in the disease.

Since early intervention is clearly vital to long-term success for both the dementia patient and the caregivers, the PDC approach incorporates health education and social work methods from the beginning. PDC examines seven general factors that are assessed and planned for from the point of diagnosis. These factors include: legal and financial, safety, physical debility, mood and unnecessary functional decline, social isolation, care crises, and hospitalization planning. The initial session includes a thorough assessment of these factors, social supports, and care transition plans. A follow-up visit assures the tasks discussed have been completed and subsequent follow-up visits are scheduled on an as-needed basis. The participation and collaboration of an individual’s entire network of care providers is important. The individual with dementia, his/her partner, and family or other supportive friends are invited to take part in the sessions. Conference calling even allows geographically distant loved ones to participate.

November is National Family Caregiver Month, so it is the perfect opportunity to acknowledge the dedication of millions of family care providers. It is also an opportune time to recognize that as the demographics of our society shift, the demand for new interventions will increase and the types of available interventions and supports will change. PDC is an innovative approach to providing preventative care for individuals with dementia and resources for their care support team. This treatment model will improve the quality of life of our nation’s seniors, their children, and their grandchildren.