Care Coordination for People With Alzheimer's Disease and Related Dementias. Literature Review Methods


We conducted literature searches in PubMed, Web of Science, Scopus, Cochrane, and Ageline using the keywords "Care Coordination" and "Case Management," focusing on health care or long-term services and supports (LTSS) settings, and limited to persons with dementia or Alzheimer's disease. Searches in PubMed combined the MeSH term "Alzheimer disease" with the above keywords.

Publications were limited to articles published in the year 2000 or later and written in English. Abstracts and titles were reviewed and articles meeting the following criteria were included:

  • An RCT or observational study.

  • A sample population in which at least 75 percent had Alzheimer's disease or a related dementia.

  • A defined statistical analysis.

  • An intervention that targeted either the person with Alzheimer's disease/caregiver dyad or the person with dementia and involved some kind of care coordination (medical, LTSS, or both).

We netted a total of 60 articles from the electronic bibliographical search. Based on examination of the titles and the content of their abstracts, 29 articles were excluded as not appearing to meet our criteria. Full texts of the remaining 31 were obtained and reviewed. A hand search of these 31 articles identified nine additional articles. A total of 13 interventions (described in 16 articles) that met our selection criteria were included in the final analysis. Nine of the studies included in this review were RCTs, whereas four were observational studies. Seven of the studies took place in an international setting, and the remaining six took place in the United States. Only care management programs that explicitly targeted people with Alzheimer's disease were included. The included studies are summarized in Table 1.

TABLE 1. Summaries of Included Studies of Care Coordination for People with Alzheimer's Disease and Their Caregivers
Author   Year   Setting Participants Study Design Results: Caregiver Results: Care Recipient Utilization/Inst.
Bass et al.

Clark et al.



Kaiser Permanente of Ohio, Managed Care 157 participants with either a specific diagnosis or symptom code for memory loss.
  1. Intervention: A 1-year telephone-based care coordination focusing on education & coordination community-based services.
  2. Families were randomly assigned to either the care coordination services (intervention) or typical managed care services (control).
  3. Care Consultant: Representative from Alzheimer's Association (majority social workers).
  4. All services were provided free of charge.
  • Reduction in depression (slope = -0.12, p < 0.05), as measured by modification of CES-D.
  • Those using other Alzheimer's Association services in combination with care coordination showed reduced health deterioration (slope = -0.33, p = 0.03) & role captivity (slope = -0.51, p = 0.02).
  • Fewer health services [Kaiser care coordination (p < 0.01, OR = 0.18) & direct care community services (p < 0.10)]
  • There was no significant difference in emergency department visits, hospital admissions, & physician visits between groups
Callahan et al. 2006 Two primary care practices within a university-affiliated health care system.
  • 135 participants from either a community- based health system serving the medically indigent or a primary care practice within a Veterans Affairs (VA) Medical Center.
  • Most participants had multiple comorbid chronic conditions & were socioeconomically disadvantaged.
  • Dementia evaluated & confirmed according the Diagnostic & Statistical Manual of Mental Disorders, third edition.
  • A 12-month collaborative care coordination program which incorporates 10 published Alzheimer's disease treatment guidelines into the improvement of participant behavioral & psychological symptoms.
  • Care Coordinator: Geriatric Nurse Practitioner.
  • No mention of payment method.
  • Significant improvement in caregiver stress (Neuropsychiatric Inventory [NPI]) at the end of the intervention but not at 18 months (p = 0.03, difference of 2.2 on NPI).
  • Improved caregiver mood at 18 months (Caregiver Patient Health questionnaire, improvement of 1.6 points, p = 0.02).
  • Improved NPI which persisted 6 months after the intervention (p = 0.03, Difference of -5.6 on NPI).
  • No significant change in depression (Cornell Scale for Depression in Dementia), cognition (telephone interviews for cognitive status) or function (Alzheimer's Disease Cooperative Study ADLs).
  • Intervention participants reported more nursing and primary care visits (mean visits 9.3, p = 0.03).
  • No difference in hospitalization or nursing home placement.
Challis et al. 2002 Community mental health teams for the elderly in the United Kingdom.

Mostly home visits.

  • 43 pairs (Cases & Control) with a diagnosis of dementia & a perceived risk of institutionalization.
  • Intervention: A 2-year care coordination program incorporating both health and community-based LTSS.
  • Care Coordinator: Social Worker.
  • Quasi-experimental design which matched participants from 1 mental health team that provided care coordination to a team that did not provide care coordination.
  • Social workers had a budget to purchase care.
  • Greater reduction in input hours (-9.60), felt burden (-1.46), overall needs (4.22), & risk (-0.64) associated with certain activities (ADL assistance, personal care) (p < 0.05).
  • No difference in objective burden, malaise (stress), & strain.
  • More individuals in the care coordination group remained in their homes & were not displaced compared to individuals in the comparison group after 2 years (51% vs. 33%) with divergence beginning after 18 months.
  • Less dissatisfaction with home environment after 6 months (-0.67, p < 0.05), & improved social contacts (7.44, p < 0.05, based on caregiver response).
  • No significant differences in frequency of activities at home, dependency (CAPE), & depression (CARE schedule).
  • Compared to the intervention group, the comparison group received more visits from the mental health team (4.2 days/year) & less home health care (8.6 days/year) (p < 0.001).
  • The experimental group spent more on social services ($4,139) & professional visits ($1,344) compared to controls (p < 0.001).
  • Overall, there was no difference in costs to society.
Chu et al. 2000 Participants recruited from outpatient clinics in a Northern Alberta geriatric program & referrals from area physicians.

The intervention was provided via monthly telephone calls & home visits.

  • 75 pairs of caregivers & clients.
  • Diagnosis of early Alzheimer's disease done by referring physicians & project coordinator using criteria from both the National Institute of Neurological & Communicative Disorders & Stroke & the Alzheimer Disease & Related Disorders Association.
  • No concomitant disease or risk of institutionalization.
  • Intervention: An 18-month home care intervention focused on preparing families with Alzheimer's disease through education & supportive counseling, & early planning for LTSS.
  • Participants were randomly assigned to either the Home intervention or Control (an information package on community resources).
  • Care Coordinator: Social Worker.
  • No discussion of payment method.
  • Less burden (the Burden Interview) at 6 months (p < 0.05).
  • No difference in depression (Center for Epidemiological Studies Depression Scale).
  • No difference in amount of days spent in community, level of cognitive impairment (Mini-Mental State Examination [MMSE]), & depressive symptoms (Geriatric Depression Scale).
  • No significant difference in the number of community services used.
  • 7.7 more hours/month of care coordination for intervention group (p < 0.05).
  • Clients with mild to moderate cognitive impairment (MMSE <23) in the control group were more likely to be placed in a long- term care institution, with mild to moderate treatment clients staying on average 52 days longer (no discussion of significance).
Eloniemi-Sulkava et al. 2001 Home-based care in 1 of 5 Municipalities.
  • 100 participants with dementia registered for Social Insurance.
  • Participants were subsequently reexamined by a neurologist for dementia according to the Diagnostic & Statistical Manual of Mental Disorders (V3).
  • Intervention: A 2-year nurse care coordination program providing assisted arrangements for social & health care services.
  • Participants were randomized to either receive the nurse care coordination program or usual services.
  • Payments came from Social Insurance Institution for Community Care & depends on need for care.
  • Lower rate of institutionalization (p = 0.042, Hazard Ratio = 0.12) in the first months but decreasing rate over time (p = 0.028).
  • Among participants with severe dementia, intervention participants relative to control (Severe MMSE = 0-11) remained in the community for a longer period of time; no mention of significance.
Fox et al.

Newcomer et al.

Newcomer et al.

Miller et al.





Participants recruited from 8 cities across the United States.
  • 8,905 Medicare beneficiaries (enrolled in Part A or B) with a diagnosis of irreversible dementia.
  • A 3-year Medicare-funded care coordination & community care benefit for persons with dementia.
  • Participants were randomized to either the care coordination/ community care benefit or control.
  • 2 models were tested with 1 model having a smaller care coordinator to client ratio & higher monthly reimbursement benefit, similar to the Channeling demonstration.
  • Monthly per client reimbursement caps with 20% copay; fee for service.
  • No difference in total hours of care provided by caregivers, provision of ADLs, nursing home entries, depression (short form geriatric depression scale) and burden (adapted Zarit Carer Burden Interview) across groups.
  • Small (clinically insignificant) reduction in caregiver burden & depression for a subset of sites that was significant & persistent over time.
  • Difference of 1-4 points on scale with p values ranging from less than 0.05-0.001.
  • Caregivers reported fewer tasks in which they required assistance (no discussion of significance).
  • Participants more likely to use community-based long-term care [home care (OR = 2.77, p < 0.001) & adult day care (OR = 2.61, p < 0.05). Among those using these services, treatment & control, there was no difference in the amount of services.
  • Lower Medicare expenditures ($500 on average) but savings did not compensate for the cost of the intervention. No difference in savings from either model.
  • No difference in time to institutionalization.
Jansen et al. 2011 Primary care practices in West-Friesland, the Netherlands

Home & telephone-based intervention.

  • 99 dyads with early dementia <24 on MMSE or >50% dementia risk based on 7 Minute Screen.
  • Intervention: A 1-year care coordination program focusing on the health & LTSS of persons with dementia & their caregivers.
  • Persons with dementia were randomized to either the intervention or usual care.
  • Care Coordinator: District Nurse.
  • No mention of payment.
  • Differences in depressive symptoms (Center for Epidemiologic Studies Depression Scale), burden (Self-Perceived Pressure by Informal Care) & quality of life (SF 36) were not statistically significant.
  • No difference in quality of life (Dementia Quality of Life Instrument).
  • Only statistically significant difference was utilization of Care Coordination, which increased.
Judge et al.

Agency for Healthcare Research and Quality (AHRQ)



U.S. Department of Veterans Affairs (VA) across multiple cities
  • 508 veterans
  • Most participants (82%) had moderate to severe difficulties with instrumental ADLs.
  • Past (within 2 years) diagnosis.
  • A 12-month telephone-based care coordination called Partners in Dementia Care (PDC). It involved a formal collaboration between the VA & local Alzheimer's Associations.
  • Care Coordinator: 1 based at the VA & another based at the Alzheimer's Association.
  • 8/11 psychological outcomes were statistically significantly better for participants compared to controls (either all participants or a subset of participants).
  • Improvement in depression (15% fewer symptoms), use of support services & satisfaction with VA health services after 6 months.
  • Less strain, feelings of being trapped, unmet needs & physical health strain among caregivers of severely impaired persons with dementia at 6 months & between months 7 & 12.
  • 6/8 psychosocial outcomes were better for care recipients relative to controls (mostly those with more severe impairments).
  • Less relationship strain, fewer unmet needs & lower levels of depression.
  • Temporary reduction in embarrassment about memory problems.
  • Among participants with behavioral problems, there was 20% reduction in hospital readmissions for intervention participants relative to control.
  • Participants with greater cognitive impairment were less likely to be placed in nursing homes or assisted living facilities (20% vs. 33%).
  • Intervention veterans were more likely to have mental health visits, telephone-based care, & neurology visits. More primary care visits for veterans with more personal care dependencies. No difference in volume of these services.
  • No effect on inpatient admission or emergency department visits.
Lam et al. 2010 Recruited from psychogeriatric outpatient & memory clinics in a teaching hospital located in Hong Kong.

Home visits initially, then telephone calls & follow-up at the hospital clinics.

  • 102 participants.
  • Mild dementia: Chinese MMSE score of 15 or above & a clinical dementia rating of 1.
  • No other chronic disease.
  • Intervention: A 4-month care coordination program providing support, skills training, health coordination, & referrals for local social services.
  • Participants were randomly assigned to either care coordination or a control group.
  • Care Coordinator: Occupational Therapist.
  • No discussion of payment.
  • Changes in stress (Zarit Carer Burden Interview), psychological health (General Health Questionnaire), & Subjective Quality of Life (Personal Well-Being Index) were not significant across groups.
  • Changes in dementia score (CMMSE), Depression (CSDD), psychiatric symptoms & behavioral disturbances (NPI) & Quality of Life (PWI-ID) were not significant across groups.
  • Change in Depression at 4 months was significant for the intervention group but not the control (p = 0.002 CI = -4.8-1.0).
  • Caregivers in the intervention group used more domestic helpers & day care at month 4 & 12 than caregivers in the control group (p < 0.05).
Meeuwsen et al. 2012 Participants recruited from 9 Dutch memory clinics in a university hospital, general hospital, or old age psychiatric clinic.

Home & telephone consults involved.

  • 175 dyads.
  • Newly diagnosed dementia according to the Diagnostic & Statistical Manual of Mental Disorders (DSM-IV) & a clinical dementia rating of 0.5, 1 or 2.
  • Intervention: A 12-month disease management program focused on dementia Rx drug guidance, & referrals to health & LTSS.
  • Dyads were randomly assigned to either the memory clinic or a general practitioner.
  • No discussion of payment.
  • No significant difference in self-perceived burden at 6 & 12 months (Sense of competence questionnaire).
  • No significant difference in quality of life rated by caregiver at 6 & 12 months (Quality of life in Alzheimer's disease instrument).
Nourhashemi et al. 2010 Memory clinics in university or general hospitals in France.
  • 1,131 participants.
  • Dementia based on criteria of the National Institute of Neurological & Communicative Disorders & Stroke/ Alzheimer Disease & Related Disorders Association for probable or possible Alzheimer's disease.
  • MMSE of 12-26.
  • A biannual guideline-based care consultation service provided by physicians at a memory clinic.
  • Duration: 1 year.
  • Care coordinator: Physicians at the Memory Clinic.
  • No difference in functional decline (Alzheimer's Disease Cooperative Study ADLs score).
  • No difference in risk of being admitted to institutional care or mortality.
  • Among those admitted, intervention participants were most likely to be admitted for reasons related to caregivers (61.5% vs. 38.5%) & for control participants, worsening medical conditions (70.59% vs. 29.41%) p = 0.0046.
Specht et al. 2009 Participants were recruited from 8 counties in rural Iowa.

Home visit & telephone contacts if needed.

  • 249 families of participants with suspected memory impairment.
  • A 4-year enhanced service delivery model (care coordination) focusing on coordination of LTSS.
  • Counties receiving either the enhanced nursing care coordination model or existing CMPFE program were randomly selected.
  • Care Coordinator: Nurse Trained in Dementia Care.
  • No discussion of payment.
  • Lower odds of extensive/substantial stress (p = 0.019, CI = 1.27-24.37), extremely or substantially.
  • Compromised well-being (p = 0.038, CI = 1.10-59.32) & inadequate/slightly inadequate endurance (No p value given, Nursing Outcomes Classification at the University of Iowa).
  • No difference in health status (SF-36).
  • No change in behavioral rating index, Cognitive Status (MMSE) & Stage of Dementia (GDS).
  • Increase in functional ability for the intervention group relative to the controls (p < 0.0001).
Vickrey et al. 2006 18 primary care clinics & 3 community agencies in California

Services provided at intervention clinics with telephone-based follow-up & home reassessments provided.

  • 408 Medicare participants with dementia verified by physicians & diagnosis codes.
  • Few comorbidities.
  • Intervention: An ~18-month guideline-based disease management program.
  • Randomization was done at the clinic level. Clinics within each health care organization were assigned to either intervention or usual care.
  • Care Coordinators: Health Care Organization (Social Worker) & Representative from Community organization.
  • Capitated payments.
  • 30.1% mean difference in number of guidelines for which care was adherent per participant at follow-up (p < 0.001).
  • Caregiver ratings of health care quality for participants with dementia were higher for participants in the intervention compared to those in the usual group (mean difference of 0.5, p <0.011).
  • Difference of 0.06 in decline of health-related quality of life at 18 months (HU13, p = 0.034).
  • Caregiver knowledge, use of adult day care, quality of life & receipt of services or information from agencies providing meals to homebound elderly did not differ significantly between groups.
NA = Not Available.

View full report


"AlzCC.pdf" (pdf, 295.84Kb)

Note: Documents in PDF format require the Adobe Acrobat Reader®. If you experience problems with PDF documents, please download the latest version of the Reader®