Selecting the Instrumentation to Evaluate the QoL in Clients with Dementia

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A key aim of the client interview (CLINT) in Care Keys is to provide a client perspective on QoL and satisfaction with services. However, people with communication difficulties, including people with cognitive impairment, are a significant group of clients who are often unable to respond to the interview format of instruments such as the PGCMS and the WHOQOL-Bref. In a study by Balcombe, Ferry, and Saweirs (2001), 46% of patients admitted to an acute care of the elderly hospital ward were excluded from taking part in a study using the PGCMS because of cognitive impairment or communication difficulties, effectively making them "voiceless" within the research process. Deficits in attention, orientation, memory, judgement, insight and communication may affect their ability to understand or respond to questions, or to communicate subjective states. As the Care Keys project did not want to exclude the clients with dementia, there was a need to determine valid measures to give them also a voice in our study.

The evaluation and piloting of the instruments for clients with dementia was undertaken in participating project countries. A number of instruments to assess well-being were considered and it was seen as important to cover the same domains, as far as possible, as those covered by the WHOQOL-Bref and the PGCMS. We did not want to assume a qualitative difference in the important areas for QoL in people with dementia, in what is generally a progressive but individually variable condition. Some instruments, such as QOL-AD (Logsdon, Gibbons, McCurry, & Teri, 2002) and DQoL (Brod, Stewart, Sands, & Walton, 1999), are only suitable for people with mild to moderate impairment and/or people living at home; indications were that people with mild to moderate impairment could respond to the items in the WHOQOL-Bref and the PGCMS, and there would be no particular advantage in substituting another scale. Some scales, although designated as QoL scales, rely primarily on the presence or absence of symptoms of depression. Depression is an important issue and needed to be included in the assessment of people with dementia, but we also wanted a broader assessment of well-being.

The two QoL scales for clients with moderate to severe dementia were piloted: the Quality of Life in Late Dementia scale (QUALID, Weiner, MartinCook, Svetlik, Sainem, Foster, & Fontaine, 2000); and the Well-Being Profile (WBP, Bruce, 2000), based on dementia care mapping and the theory of well-being of Kitwood and Bredin (1992). Possible depression scales included the Cornell Scale for Depression in Dementia (Alexopoulos, Abrams, Young, & Shamoian, 1988) and the Depressive Signs Scale (Katona & Aldridge, 1985).

Ultimately, the instruments chosen were the QUALID and the Cornell Scale for Depression in Dementia. QUALID was developed in the Department of Psychiatry at the University of Texas Southwestern Medical Center to assess the effects of treatment on QoL in people with severe dementia. It consists of 11 observable behaviours rated for the previous week on a five-point Likert scale by interview with a caregiver. It also includes two questions for the interviewer to rate the quality of the information. A sum score of responses indicates relative well-being in a range 11-55, with lower scores representing higher QoL. Although relatively new and untested, the scale was appropriate for our use and was well received during the pilot testing. The Cornell Scale for Depression in Dementia is completed by an interviewer and includes both the responses of the client and a relative or care person who knows the client well, and based on the week prior to interview. Responses use a three-point scale (symptom absent, mild or intermittent or severe). The scale includes 19 items covering mood-related signs (anxiety, sadness, lack of reactivity to pleasant events, irritability); behavioural disturbance (agitation, retardation, multiple physical complaints, loss of interest); physical signs (appetite loss, weight loss, lack of energy); cyclic functions (diurnal variation of mood, difficulty falling asleep, multiple awakenings during sleep, early morning awakening); idea-tional disturbance (suicidal, poor self-esteem, pessimism, mood congruent delusions). A sum score indicates overall depression with scores also for the different sub-components.

For the empirical testing and reporting of results, it was necessary to be able to describe the respondents' cognitive functioning. Either the Cognitive Performance score (CPS, Morris et al., 1994) from a current RAI assessment, where available, or the standardised Mini Mental State Exam (Folstein et al., 1975) were used to categorise respondents according to cognitive function into one of the three groups, using the following scores (Hartmaier et al., 1995):

1. The cognitively intact, borderline or mildly impaired, who have MMSE scores >18, or CPS scores of 0, 1 or 2.

2. The moderately impaired, who have MMSE scores of 16, 17 or 18; or CPS score of 3.

3. The severely impaired, who have MMSE scores of 15 or less, or CPS scores of 4, 5 or 6.

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