Outcomes of the telephone screening process are shown in . Telephone contact was made with 62% (499/800) of households that included a total of 603 individuals. Evaluators made a total of 1,674 calls and spent approximately 350 total hours making contacts. Of the households contacted, 52 individuals were ineligible due to (1) lack of fluency in English (n=22), (2) being too impaired to speak on the telephone (n=8), (3) being younger than age 70 (n=3), (4) working fulltime (n=14), or (5) being deceased (n=5). Another 16 were contacted, but the outcome was not available, leaving a total of 535 individuals who were reached successfully by telephone. Of these, 292 (54.6%) were screened and 243(45.4%) declined. Of those screened and for whom there was a consent form on file (n=284), 78 (27.5%) screened positive.
Demographic and cognitive status characteristics of the 284 individuals screened are shown in . On average, individuals who screened positive for cognitive impairment were significantly older (p<0.001) and had fewer years of education (<0.001), but were not more likely to be female, white or married.
Summary of Demographics and Cognitive Screening Measures for Telephone Screen Participants
Diagnostic data for the 43 individuals who participated in a home visit (33 screened positive, 10 screened negative) are in . Thirteen individuals met criteria for dementia, which included 36% of those who screened positive and 10% of those who screened negative. compares demographic and clinical characteristics by diagnostic status. For 19 participants, a proxy informant was available, and of these, 18 met the definition of a caregiver (i.e. a person with whom the participant had regular contact and on whom the participant depended on for assistance with daily activities). There were no statistically significant differences in demographic variables among groups.
Telephone Screening Status by Diagnostic Status
Characteristics of Participants Randomly selected for Home Visit Assessment by Diagnostic Status (n=43)
The groups differed significantly on all cognitive measures assessed except the IQCODE (p= 0.189), and also differed significantly on both instrumental ADLs (p=0.001) and basic ADLs (p=0.030). There were no significant differences between groups on self-reported general health, neuropsychiatric symptom severity, or caregiver burden.
Needs related to dementia care as assessed by the JHDCNA are shown in for participants found to have cognitive disorders (i.e. dementia or MCI). On average, those with dementia had 6.6 (SD 3.5) unmet needs and nearly all (12/13) had at least one unmet need. The most common unmet needs of those with dementia were need for a dementia workup (9/11), general medical care (7/9), environmental safety (10/10), assistance with ADL impairments (8/13), and access to meaningful activities (7/9). Among the 8 caregivers of participants with dementia, 7 had at least one unmet dementia care related need; the average number of caregiver unmet needs was 5.0 (SD 3.7). Caregivers greatest unmet needs were for education about dementia (5/6), knowledge of community resources (3/3), and caregiver mental health care (5/5).
Distribution of JHDCNA Domains by Diagnostic status and Unmet Needs
Among those with MCI, the average number of unmet needs was 3.4 (4.2) with over two-thirds (12/16) having at least one unmet dementia care related need. The primary unmet needs of those with MCI focused on memory evaluation (10/10), safety (8/8), and meaningful activities (6/6). Among the 7 caregivers for individuals in the MCI group, 4 had at least one unmet need. The primary unmet needs for caregivers were for education about memory disorders (4/6), knowledge of community resources (3/3), and caregiver mental health care (3/3). Where urgent needs were identified, participants and/or caregivers were given direct feedback and information about resources at the time of the home assessment. As this was a cross-sectional pilot study, no prospective data are available as to the outcomes.