Help! Reduce Burden Through Advance Care Planning

Posted on

Oct 20, 2017

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Family caregiving in all its forms is challenging and often described as burden.
The term burden is neither bad nor goodbut rather a usual component of human relationships and the giving and receiving of care. In the context of dementia caregiving, the unique features of the disease add considerable difficulty. Memory loss is frequently mistaken for normal aging, minimized or hidden by those affected, or ascribed to stress or other life circumstances. Caregivers may have a hard time separating the person from the disease.

Over time, caregivers may become less engaged in their own self-care and increasingly vulnerable to illness, fatigue and psychological depletion. Early diagnosis optimizes education of the patient and family, allowing them to develop a professional support team, paving the way for the introduction of community supports.

Most caregivers work diligently to respect historical preferences and creatively respond to emerging symptoms. Advance care planning is vital in the care of those with cognitive impairment, as diminished capacity is a certain eventuality. Advance care planning includes:

discussions with medical providers for health specific information
discussions with family members about patient preferences and goals of care
completing Advance Directive forms
support the person with early stage dementia to express goals, preferences and wishes that contribute most to a clear understanding of the care setting and treatment interventions that are preferred.

These conversations begin a process where the patient and family speak openly about the situation. Shared family caregiving reduces the isolation that can become a debilitating component of caregiving.

In addition, open communication paves the way for obtaining formal supports. Involvement in caregiver support groups and support groups for care recipients is beneficial for social engagement and information sharing. Community services such as supported transportation, cognitive stimulation programs in senior centers, exercise programs, respite care and adult day care are relatively low cost and delay institutional placement. Early introduction of services reduces the risk that the caregivers will become soloand exhaustedcaregivers.

Article submitted by: Authors:

Katherine Supiano, PhD, LCSW, FT
Director, Caring Connections: A Hope and Comfort in Grief Program

Associate Professor, College of Nursing, University of Utah
https://healthcare.utah.edu/caring-connections/
Jacqueline Eaton, PhD
Director, Gerontology Interdisciplinary Program
Assistant Professor, College of Nursing, University of Utah
http://nursing.utah.edu/gerontology/



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