Care Coordination for People With Alzheimer's Disease and Related Dementias. Coordinating Medical Services and Long-Term Services and Supports


All of the remaining ten programs coordinated both medical services and LTSS. LTSS arranged by the care coordinators typically included day care, home care, social centers, and respite care. The involvement of health care professionals ranged from direct care coordination responsibilities to consultations as needed.

United States Studies

The following four studies took place in the United States. The Rural Iowa Alzheimer's Demonstration described by Specht et al. (2009) provided nurse care coordination to individuals with a suspected memory impairment. Some of the study design issues that may have posed a challenge include a lack of confirmed dementia diagnoses, inconsistent follow-up times, and differences in outcomes measures at baseline.

Three United States-based programs coordinated care for persons with dementia and their caregivers within integrated health care systems (such as Kaiser Permanente). The advantage of these programs was the availability of an integrated system which facilitated access to LTSS. The managed care environment--such as capitated payments, gatekeeping, and electronic medical records--already provided some coordination of the health care needs of the members, although they were not previously focused on people with Alzheimer's disease. The unique contribution of the interventions was to integrate LTSS into that preexisting health system.

The Cleveland Alzheimer's Managed Care demonstration described by Bass et al. and Clark et al. was a collaboration between a local Alzheimer's Association chapter and Kaiser Permanente of Ohio to provide telephone-based care coordination for one year (Bass et al., 2003; Clark et al., 2004). Families were randomly assigned to either care coordination or usual care. Most of the care coordinators, who were staff of the Alzheimer's Association chapter, were social workers, and all services were provided at no cost to participants. In addition to persons with a specific diagnosis of dementia, individuals with a symptom code for memory loss were also included. The study excluded individuals with the most severe memory impairments. Although improvements were observed for both persons with dementia and their caregivers, the intervention mainly focused on caregivers.

PDC was 12-month telephone-based care coordination collaboration, this time between the VA and local Alzheimer's Association chapters (AHRQ, 2012; Judge et al., 2011). Built on two prior studies (the Cleveland Alzheimer's Managed Care Demonstration (Bass et al., 2003) and the Chronic Care Network for Alzheimer's Disease (Maslow et al., 2001), PDC was a 5-year research investigation that tested the effectiveness of a telephone-based care coordination intervention designed to address the unmet care needs of veterans with dementia and their family caregivers across all dementia stages. The intervention included linkages between the VA and the Alzheimer's Association, delivery system redesign and decision support, self-management training, and the development of a clinical information system. The main delivery system redesign components were the addition of two new care coordinator positions at each organization: the VA's care coordinator, who focused on veterans' medical and nonmedical needs and assisted families with effectively using VA resources; and the Alzheimer's Association care consultant, who focused on needs of informal caregivers such as care-related strain and accessing non-VA resources. The program was conducted in Houston and Boston. Judge et al. analyzed selected data from the 93 families included in the analysis and reported that those who received the intervention were similar to the general VA population. There were no outcome comparisons made in the peer-reviewed journal article, but additional outcome data on this intervention were found on AHRQ's Innovations Exchange website (AHRQ, 2012).

Vickrey et al. (2006) evaluated dementia guideline-based care coordination in primary care clinics for persons with dementia and their caregivers, who were randomly assigned at the clinic level to either the intervention or control arm. The intervention was an 18-month disease management program within a capitated system. The program involved explicit protocols whereby the representative from the LTSS agency would be notified if his or her services were needed and given access to the individual's care plan through Internet-based care coordination software.

International Studies

The following six studies took place outside of the United States, including Canada, the United Kingdom, Finland, the Netherlands, and France. The Early Home Care Program described by Chu et al. (2000) was a pilot project run by a large integrated health care system in Canada. The program, an 18-month home care intervention, targeted individuals with a diagnosis of early dementia. Participants were randomized to either the intervention group or a control group. The intervention group received case management, occupational therapy, physical therapy, social work, nursing, respiratory therapy, in-home and out-of-home respite, homemaking, personal care assistance, volunteer service, and psychiatric consultation. The intervention group received an average of 7.7 hours per month of care coordination services. The control group received an information packet on community resources. The primary outcome measures were caregiver burden and institutionalization.

The Lewisham Case Management Scheme in the United Kingdom, described by Challis et al. (2002), incorporated a care coordinator (social worker) into a mental health team of doctors, nurses, psychologists, and occupational therapists. The intervention was a 2-year program in which clinicians were responsible for managing acute care needs and care coordinators were provided a budget to purchase LTSS for participants as needed. The limitations of this study arise from the observational design and the use of unmatched comparison groups for the evaluation of certain outcomes. The comparison group also had access to a mental health team, which may have attenuated the comparison.

Eloniemi-Sulkava et al. (2001) evaluated a home-based nurse care coordination program for persons with dementia in Finland. Participants were recruited through a national dementia registry and were randomized to either the care coordination program or usual care. The intervention consisted of a 2-year nurse-led care coordination program to assist patients with arrangements for social services and medical care.

Jansen et al. (2011) described a care coordination program led by senior nurses specializing in geriatric care in the Netherlands. The 1-year program targeted individuals with either early dementia or a greater than 50 percent risk of dementia based on common dementia measurement scales. Participants were randomized to either the intervention or usual care. The intervention consisted of geriatric nurses making home visits, writing a care plan (providing protocols for managing 30 problem areas), organizing family meetings, following up via telephone every 3 months, and referring families to other providers. Outcomes included a comparison between the two randomized groups on measures of care received, such as the number of home care hours per week and the number of respite care days.

Meeuwsen et al. (2012), another study from the Netherlands, compared care coordination by a memory clinic to coordination by a general practitioner who was given guidelines on dementia care. These clinics are designed for the diagnosis and treatment of memory-related conditions. Participants were diagnosed with dementia but had scores of anxiety and depression that were below levels of clinical depression or anxiety. Scores of participant cognition and quality of life were also high at baseline. Meeuwsen et al. (2012) cited biases caused by attrition in the control group as a possible limitation.

Finally, Nourhashemi et al. (2010) evaluated care coordination using a specific care plan in French memory clinics. The goal of the intervention was to incorporate biannual care coordination by the physicians in the memory clinics, with the main outcome measure being functional capacity of the patients; secondary outcomes included institutionalization rate and mortality. Participants with possible or probable Alzheimer's disease were selected based on standardized diagnostic criteria and an MMSE score of 12–26. They described selection biases, issues of contamination, and a government initiative which encouraged more care coordination in memory clinics as possible explanations for their results.

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