IIR 04-238
Partners in Dementia Care
Mark E. Kunik, MD MPH Michael E. DeBakey VA Medical Center, Houston, TX Houston, TX Funding Period: July 2006 - February 2011 Portfolio Assignment: Long Term Care and Aging |
BACKGROUND/RATIONALE:
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). OBJECTIVE(S): 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). If effective, the long-term objective is to implement PDC in a regional, Quality Enhancement Research Initiative (QUERI)-like demonstration involving 30 to 40 VA medical centers. Additionally, the PDC approach will be adapted for other chronic conditions (e.g., heart disease, COPD, diabetes). 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. Multiple regression or logistic regression analyses were the principal statistical techniques used to estimate the effects of the PDC intervention. A dichotomous variable differentiated the intervention and comparison groups. Regression equations statistically controlled for background and context characteristics that were significantly different between intervention and comparison groups at baseline (e.g., region of the country, caregiver employment status, and age). Additionally, to test the two conditional-effects hypotheses, regression equations included multiplicative terms constructed by multiplying the dichotomous variable that differentiated the intervention and comparison groups by measures of Veterans' impairments and the measures of initial difficulties. FINDINGS/RESULTS: Enrollment: 1) 508 Veterans age 60 and older with Alzheimer's disease and other dementias 2) 486 of their informal family caregivers Use of PDC: Data from the assessments and goals indicated that areas of need were not limited to any one issue or subset of issues but were widely distributed across a variety of domains for both Veterans and their caregivers. These findings suggest that broad-based interventions may be more effective in addressing the myriad issues faced by families across the continuum of the illness. Findings for action steps suggested a primary focus on getting/giving information and action-oriented tasks to access services and programs. More than three-quarters of families had action steps designed to improve access to VA benefits or service programs. Most action steps were assigned and completed by Veterans' spouses, and most action steps were successfully accomplished. These findings underscore the importance of addressing caregivers' needs, which, if ignored, place individuals at high risk for negative caregiving consequences and jeopardize the homecare situation. On average, families had two contacts per month with care coordinators, which enabled maintenance of long-term relationships in a time- and cost-efficient way. Action steps and contacts were equally distributed between VA DCCs and AA CCs, highlighting the benefits of combining the strengths and resources of two complementary organizations. Findings for Caregivers Intervention-group caregivers had significant improvements in measures representing all four categories of outcomes (i.e., primary subjective stressor; mediators; role and intrapsychic strain; and general well-being) compared with the comparison group. Most benefits were observed after 6 months in PDC, and most of these benefits were maintained, but not increased from months 7 to 12. Eight of the 11 individual caregiver outcomes significantly improved for the intervention group compared with the comparison group after 6 months in the study. This included unmet needs, caregiver support service use, caregiver support knowledge, number of informal helpers, caregivers' feelings of role captivity (i.e., feeling trapped in the caregiver role), physical health strain because of caregiving, and satisfaction with the VA healthcare system. Two of the 11 individual caregiver outcomes significantly improved for the intervention group compared with the comparison group from months 7 to 12 (i.e., the second half of the study period). These benefits were observed for the number of caregivers' informal helpers and relationship strain between caregivers and Veterans. Two of the 11 individual caregiver outcomes showed no significant improvement after either six or 12 months in PDC: caregivers' feelings of emotional strain and isolation because of caregiving. Two beneficial intervention effects pertained to all intervention caregivers; depression and support-service use. Most other significant effects were for caregivers assisting Veterans with higher levels of impairment, particularly higher cognitive impairment and, to a lesser degree, high personal care dependency or behavior problems. One finding of note was the significant decrease in intervention-group caregivers' symptoms of depression after 6 months in the study, which was applicable to the entire intervention group, regardless of Veterans' impairments or baseline levels of depression. After 6 months in PDC, intervention-group caregivers had a 15% decrease in depression scores. Another example of a beneficial effect was a reduction in "unmet dementia-related needs" for intervention caregivers assisting more cognitively impaired Veterans. This segment of the intervention group had an average of five fewer unmet needs compared with the comparison group after 6 months in PDC. Findings for Veterans Intervention-group Veterans had significant improvement in measures representing all four categories of outcomes (i.e., primary subjective stressor; mediators; role and intrapsychic strain; and general well-being) compared with the comparison group. Similar to findings for caregivers, most benefits were after 6 months in PDC; and most of these benefits were maintained, but not increased, from months 7 to 12. After 6 months in PDC, five of the nine individual Veteran outcomes significantly improved for the intervention group compared with the comparison. This included unmet needs, Veterans' depression, feelings of embarrassment about memory problems, isolation, and knowledge of community services. Only one of the nine individual Veteran outcomes significantly improved for the intervention group compared with the comparison group from month 7 to month 12 (i.e., the second half of the study period). One of the nine individual Veteran outcomes showed no significant improvement after either 6 or 12 months in PDC: Veterans' community service use. Additionally, findings for satisfaction with physician care and relationship strain were mixed. One individual outcome improved for all Veterans after 6 months in PDC: embarrassment about memory problems decreased, regardless of severity of symptoms or baseline levels of embarrassment. There was more than a 25% reduction in scores on the measure of embarrassment after 6 months. Service Utilization and Cost Outcomes: Findings for hypoteses posting PDC would lead to decreased service use and cost were mixed. PDC decreased the number of hospital admissions for those with behavioral problems at baseline and decreased the likelihood of long term care placement for those with more cognitive impairment at baseline. PDC increased likelihood of mental health and neurology outpatient visits and increased number of primary care outpatient visits. There was no change in ER visits. Although cost findings are preliminary, it appears that PDC had higher total costs and hospitalization costs, but decreased pharmacy costs for those with more cognitive impairment. At baseline, we found that understanding and accessing VA benefits and services were among the needs most frequently identified by Veterans and caregivers. One of the primary outcomes of PDC is that it helps Veterans and caregivers understand and use VA services. This is likely a key driver in the increase use of VA outpatient services and costs. IMPACT: The VA has put a high emphasis on improving the quality of dementia care throughout the VA which is illustrated by VA dementia steering committee recommendations and creation of VISN-wide and facility dementia care committees. PDC finds that Veterans and caregivers have multiple medical and non-medical dementia-related needs met. PDC with its combined VA and Alzheimer Association care coordination to meet needs Veterans and their caregivers living at home in the community. PDC leads to multiple positive psychosocial and satisfaction outcomes and has potential of being an exemplar program for improving dementia care and outcomes for Veterans and their caregivers. External Links for this ProjectDimensions for VADimensions for VA is a web-based tool available to VA staff that enables detailed searches of published research and research projects.Learn more about Dimensions for VA. VA staff not currently on the VA network can access Dimensions by registering for an account using their VA email address. Search Dimensions for this project PUBLICATIONS:Journal Articles
DRA:
Mental, Cognitive and Behavioral Disorders, Aging, Older Veterans' Health and Care, Health Systems Science
DRE: Diagnosis, Treatment - Observational Keywords: Caregivers – not professionals, Dementia, Patient outcomes MeSH Terms: none |