Graduation Year

2012

Document Type

Dissertation

Degree

Ph.D.

Degree Granting Department

School of Aging Studies

Major Professor

Debra Dobbs

Co-Major Professor

William Haley

Keywords

Advance Directives, Alzheimer's Disease, Artificial Nutrition and Hydration, Care Partners, End of Life, Transtheoretical Model

Abstract

Advance Care Planning has been advocated for over 20 years as a way in which individuals who are no longer able to speak for themselves, may still convey their preferences regarding a wide of array of decisions, including medical care. Advance care planning may not be initiated by individuals for many reasons, and even when initiated, may not be specific enough to help guide decision making. Recent advance care planning models have utilized disease specific information to help guide end of life health care decision-making. Persons diagnosed with mild cognitive impairment face an increased possibility of developing dementia at some point in the future, but may retain decision making capability for a window of time, and thus the opportunity to participate in advance care planning. The advance care planning experiences of individuals with mild cognitive impairment have not been extensively studied.

This study explored the advance care planning experiences of persons with mild cognitive impairment and their care partners' understanding and views of advance care planning, and if the diagnosis of mild cognitive impairment affects the advance care planning practices of these two groups. A convenience sample of 10 individuals with mild cognitive impairment and their 10 care partners (n=20) were recruited and interviewed. Using a grounded theory qualitative analysis approach, four themes were identified (1) decreased awareness regarding advance care planning from individuals with mild cognitive impairment versus a heightened awareness for the care partners; 2) the preference for comfort care measures only; 3) preferences for future end of life healthcare decisions largely influenced by previous end of life experiences with family and friends; and 4) lack of discussion of end of life healthcare decisions related to dementia and/or artificial nutrition and hydration by physicians or other healthcare providers. In addition two latent themes emerged including from the care partners, the importance of the mild cognitive impairment support group and lawyers for advance care planning and from both care partners and the mild cognitive impairment participants, trying to maintain autonomy, to `hang on' to self were identified. Study implications include the need for structured advance care planning interventions with individuals diagnosed with mild cognitive impairment to focus on common end of life scenarios, such as whether to use artificial nutrition and hydration, which will require future surrogate decision making.

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