Do People with Dementia Have a Voice in Decisions Regarding Their Care? Current Clinical Assessments of Quality of Life
Mentor 1
Sabine Heuer
Location
Union 344
Start Date
5-4-2019 12:20 PM
Description
Recent changes in the health care funding industry have the potential to shift service delivery in long-term care from a medical to a person-centered care approach. Person-centered care is based on promoting choice, dignity, respect, self-determination, and purposeful living. In contrast, based on the traditional medical model, the patient is the passive recipient of care provided by medical professionals (e.g., SLPs). It is often assumed that due to cognitive impairments, people with dementia (PWD) are incapable of making choices and completing assessment procedures that require their active participation. In order to implement person-centered care, it is critical to use measures that reflect critical tenants of this approach – self-determination and decision making. The purpose of this literature review was to determine whether current clinical practice of assessment of quality of life (QoL) reflects person-centered care principles in terms of assessment methods (proxy, observational, or self-assessment) and assessment content. A literature search was conducted using PsychInfo, CINAHL, and PubMed databases, yielding 25 studies that were included in the literature review. Based of those, 55 assessment tools were reviewed. Twenty-four addressed some aspect of QoL: engagement, interactions, depression, health-related QoL, emotional well-being and/or overall well-being. Of those 24 outcome measures, 16 were observational, 4 were self-report, and 4 were either self-report or proxy-report. While there was a large number of observational outcome measures reported, there were only few self-reported outcome measures that directly assessed QoL in PWD. Thus, reported outcome measures for QoL do not reflect the changing health care delivery model. While there are confounding factors to using self-reported outcome measures with PWD that might affect validity and reliability (such as cognitive-linguistic deficits), research has shown that there are feasible and reliable ways to promote self-report of PWD and to involve them in all aspects of their care.
Do People with Dementia Have a Voice in Decisions Regarding Their Care? Current Clinical Assessments of Quality of Life
Union 344
Recent changes in the health care funding industry have the potential to shift service delivery in long-term care from a medical to a person-centered care approach. Person-centered care is based on promoting choice, dignity, respect, self-determination, and purposeful living. In contrast, based on the traditional medical model, the patient is the passive recipient of care provided by medical professionals (e.g., SLPs). It is often assumed that due to cognitive impairments, people with dementia (PWD) are incapable of making choices and completing assessment procedures that require their active participation. In order to implement person-centered care, it is critical to use measures that reflect critical tenants of this approach – self-determination and decision making. The purpose of this literature review was to determine whether current clinical practice of assessment of quality of life (QoL) reflects person-centered care principles in terms of assessment methods (proxy, observational, or self-assessment) and assessment content. A literature search was conducted using PsychInfo, CINAHL, and PubMed databases, yielding 25 studies that were included in the literature review. Based of those, 55 assessment tools were reviewed. Twenty-four addressed some aspect of QoL: engagement, interactions, depression, health-related QoL, emotional well-being and/or overall well-being. Of those 24 outcome measures, 16 were observational, 4 were self-report, and 4 were either self-report or proxy-report. While there was a large number of observational outcome measures reported, there were only few self-reported outcome measures that directly assessed QoL in PWD. Thus, reported outcome measures for QoL do not reflect the changing health care delivery model. While there are confounding factors to using self-reported outcome measures with PWD that might affect validity and reliability (such as cognitive-linguistic deficits), research has shown that there are feasible and reliable ways to promote self-report of PWD and to involve them in all aspects of their care.
