Partners in Dementia Care: A Telephone Care Consultation Intervention Provided to Veterans in Partnership With Local Alzheimer's Association Chapters
Partners in Dementia Care: A Telephone Care Consultation Intervention Provided to Veterans in Partnership With Local Alzheimer's Association Chapters
Background: Partners in Dementia Care (PDC) is a care coordination and support service
 intervention for veterans with dementia and their family caregivers, delivered through
 partnerships between VA medical centers and local Alzheimer's Association Chapters. PDC was
 designed to be a feasible and practical intervention to integrate health, community, and
 support services. PDC has a standardized protocol for care coordination and support services,
 including guidelines for care plan assessment, care plan development and implementation,
 ongoing monitoring, and reassessment. It also offers a structured training curriculum for
 providers and an operations manual for uniform implementation.

 Objectives: The primary objective was to test the impact of PDC on outcomes for veterans with
 dementia and family caregivers. Two specific research objectives and corresponding hypotheses
 were addressed: 1. To test the impact of PDC on three categories of outcomes: psychosocial
 well-being outcomes (patient and caregiver effects); health care service use (patient effects
 only); and health care cost (patient effects only). HI:PDC, compared to usual care, will
 improve psychosocial well-being for patients with dementia and their caregivers. H2:PDC,
 compared to usual care, will reduce health care service use for patients with dementia.
 H3:PDC is preferred to usual care based on cost-benefit analyses. H4:The PDC intervention
 will be more effective in improving psychosocial well-being and reducing health care service
 use for patients and caregivers dealing with more severe patient impairment (e.g., cognitive
 status, functional status, and level of problem behaviors). 2. To evaluate the impact of PDC
 on role and intra-psychic strains caused by dementia and its care (patient and caregiver
 effects). H5a:PDC, compared to usual care, will decrease patient role and intra-psychic
 strain. H5b:PDC, compared to usual care, will decrease caregiver role and intra-psychic
 strain. H6:The PDC intervention will be more effective in decreasing role and intra-psychic
 strains for patients and caregivers dealing with more severe patient impairment (e.g.,
 cognitive status, functional status, and level of problem behaviors).
Background:

 Dementia affects the entire family by negatively impacting multiple domains including
 physical health, emotional health, social relationships, and legal and financial issues
 (Gurland, 1980; Kunik, Snow, Molinari, Menke, Souchek, Sullivan et al, 2003; Schulz,
 Visintainer, & Williamson, 1990; Wright, Clipp, & George, 1993). Particularly challenging is
 accessing the range of services needed to address the care needs of both the individual with
 dementia and the primary family caregiver. Common issues include: obtaining adequate
 diagnostic testing; understanding treatment options and medications; difficulties with memory
 and behavioral symptoms; and care- and illness-related strain (Mitnick, Leffler, & Hood,
 2010). Additionally, many unmet care needs are the result of service fragmentation and
 inadequate communication among different medical providers, medical providers and consumers,
 and medical providers and community services (Reuben, Levin, Frank, 2009).

 Built upon two prior studies: the Cleveland Alzheimer's Managed Care Demonstration (Bass,
 Clark, Looman, McCarthy, & Eckert, 2003) and the Chronic Care Networks for Alzheimer's
 Disease (CCN/AD) (Maslow & Bass, 2003; Maslow & Selstad, 2001), PDC was a 5-year research
 investigation that tested the effectiveness of a telephone-based, innovative
 care-coordination intervention designed to address the unmet care needs of Veterans with
 dementia and their family caregivers across all dementia stages. PDC was implemented through
 formal partnerships between the VA medical centers and local Alzheimer's Association (AA)
 chapters. Essential features of PDC included: 1) formal partnerships between VA medical
 centers and Alzheimer's Association Chapters; 2) a multidimensional assessment and treatment
 approach, 3) ongoing monitoring and long-term relationships with families; and 4) a
 computerized information system to guide service delivery and fidelity monitoring. For a
 complete description of the PDC intervention protocol please see Judge, Bass, Snow, Wilson,
 Morgan, Looman, McCarthy, and Kunik (2010).

 Objectives:

 The primary objective of this investigation is to rigorously test the impact of PDC on a
 number of outcomes for Veterans with dementia, family caregivers, and healthcare providers.
 Within VA Medical Centers, the focus will be on improving dementia care in primary care
 clinics, including geriatrics.

 Two specific research objectives and corresponding hypotheses will be addressed:

 1. To test the impact of PDC on three categories of outcomes: psychosocial well-being
 outcomes (patient and caregiver effects); healthcare service use (patient effects only);
 and health care cost (patient effects only).

 Hypothesis 1: PDC, compared with usual care, will improve psychosocial well-being,
 including depression, health status, adequacy of care, and quality of care for patients
 with dementia and their caregivers.

 Hypothesis 2: PDC, compared with usual care, will reduce healthcare service use for
 patients with dementia, including hospital admissions, emergency department visits,
 nursing home admissions, and physician visits.

 Hypothesis 3: PDC is preferred to usual care, based on cost-effectiveness and
 cost-benefit analyses.

 Hypothesis 4: The PDC intervention will be more effective than usual care in improving
 psychosocial well-being and reducing health care service use for patients and caregivers
 dealing with more severe patient impairment (e.g., cognitive status, functional status,
 and level of problem behaviors).

 2. To evaluate the impact of PDC on role and intra-psychic strains caused by dementia and
 its care (patient and caregiver effects).

 Hypothesis 5a: PDC, compared with usual care, will decrease patient role and intra-psychic
 strain, including embarrassment about the illness, emotional strain, relationship strain, and
 social isolation.

 Hypothesis 5b: PDC, compared with usual care, will decrease caregiver role and intra-psychic
 strain, including role captivity, work care-related strain, relationship strain, emotional
 and physical health deterioration, and caregiving efficacy.

 Hypothesis 6: The PDC intervention will be more effective than usual care in decreasing role
 and intra-psychic strains for patients and caregivers dealing with more severe patient
 impairment (e.g., cognitive status, functional status, and level of problem behaviors).

 Methods:

 The proposed study was a 55-month, controlled trial of PDC. The project was conducted at two
 intervention sites and three comparison sites matched on organizational, provider, and
 patient characteristics.

 Partners in Dementia Care was compared to usual care. Both groups received educational
 materials about dementia at the start.

 PDC Intervention The Chronic Care Model (Bodenheimer, Wagner, & Grumbach, 2002; Bodenheimer,
 Wagner, & Grumbach, 2002) was used as an overarching framework to implement PDC and included
 the following components: 1) Formal linkages between medical centers (the VA) and community
 agencies (the Alzheimer's Association); 2) Organizational support from key leaders and
 broad-based training about PDC; 3) Delivery system redesign and decision support systems; 4)
 Self-management of dementia as outlined by the PDC intervention protocol; 5) The development
 of the PDC Care Coordination Information System (CCIS) as the clinical information system.

 PDC had four primary ways of assisting families: 1) providing disease-related education and
 information; 2) offering emotional support and coaching; 3) linking families to medical and
 non-medical services and resources; and 4) mobilizing and organizing the informal care
 network. Two key staff members implemented the intervention: a VA Dementia Care Coordinator
 (VA DCC) in VA medical centers and an Alzheimer's Association Care Consultant (AA CC) in
 Alzheimer's Association Chapters. VA DCCs primarily focused on veterans' medical and
 non-medical needs and assisted families with effectively using VA resources; AA CCs primarily
 focused on needs of informal caregivers such as care-related strain and accessing non-VA
 resources. The intervention protocol consisted of: 1) Assessment of Care Needs across medical
 and non-medical care issues that addressed 23 domains for Veterans and 14 domains for
 caregivers; 2) Development of Care Goals that matched the priorities of Veterans and
 caregivers; 3) Development of Action Steps which were concrete behavioral tasks intended to
 help families move toward goal achievement (e.g., individual responsible for completing each
 task, expected completion date); 4) On-going Monitoring of Action Steps on a regular basis to
 ensure timely completion of tasks, address potential barriers, modify or add action steps,
 and identify new goals.

 Analytic Plan With one exception, measures of "objective" characteristics, including
 community and support-service use, service knowledge, number of informal helpers, and
 Veterans' impairments, were based on information reported by caregivers. The one exception
 was a measure of impairment based on scores from a standardized mental status test that was
 administered to Veterans over the telephone (i.e., the Blessed
 Orientation-Memory-Concentration Test; Katzman et al., 1983). Additionally, a small number of
 Veterans (approximately 5%) with mild dementia did not have a caregiver; "objective"
 characteristics for these individuals were self-reported by the Veteran. Information used to
 construct measures of "subjective" characteristics, such as feelings about or perceptions of
 the quality of care and care-related strain, came directly from the individual whose feelings
 or perceptions were being represented.
Inclusion Criteria:

 -  Dementia Diagnosis

 -  veteran

 -  reside outside of a long-term care facility

 -  live within local Alzheimer Association chapter service of Houston, Oklahoma City,
 Boston, or Providence

 Exclusion Criteria:

 -  Live in long-term care