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).
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).
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.
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.
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.
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.
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.
- Pinciotti CM, Bass DM, McCarthy CA, Judge KS, Wilson NL, Morgan RO, Snow AL, Kunik ME. Negative Consequences of Family Caregiving for Veterans With PTSD and Dementia. The Journal of nervous and mental disease. 2017 Feb 1; 205(2):106-111.
- Darlak L, Bass DM, Judge KS, Wilson N, Looman W, McCarthy C, Morgan R, Maslow K, Kunik ME. Engagement of Veterans With Dementia in Partners in Dementia Care: An Evidence-Based Care Coordination Program. Journal of applied gerontology : the official journal of the Southern Gerontological Society. 2017 May 1; 36(5):570-591.
- Bejjani C, Snow AL, Judge KS, Bass DM, Morgan RO, Wilson N, Walder A, Looman WJ, McCarthy C, Kunik ME, Abraham TH. Characteristics of Depressed Caregivers of Veterans With Dementia. American journal of Alzheimer's disease and other dementias. 2015 Nov 1; 30(7):672-8.
- Bass DM, Judge KS, Maslow K, Wilson NL, Morgan RO, McCarthy CA, Looman WJ, Snow AL, Kunik ME. Impact of the care coordination program “Partners in Dementia Care” on Veterans’ hospital admissions and emergency department visits. Alzheimer's & dementia : translational research & clinical interventions. 2015 Jul 20; 1(1):13-22.
- Morgan RO, Bass DM, Judge KS, Liu CF, Wilson N, Snow AL, Pirraglia P, Garcia-Maldonado M, Raia P, Fouladi NN, Kunik ME. A break-even analysis for dementia care collaboration: Partners in Dementia Care. Journal of general internal medicine. 2015 Jun 1; 30(6):804-9.
- Ng S, Morgan RO, Walder A, Biswas J, Bass DM, Judge KS, Snow AL, Wilson N, Kunik ME. Functional Decline Predicts Emergency Department Use in Veterans With Dementia. American journal of Alzheimer's disease and other dementias. 2014 Jun 1; 29(4):362-71.
- Godwin KM, Morgan RO, Walder A, Bass DM, Judge KS, Wilson N, Snow AL, Kunik ME. Predictors of Inpatient Utilization among Veterans with Dementia. Current gerontology and geriatrics research. 2014 May 29; 2014:861613.
- Bass DM, Judge KS, Snow AL, Wilson NL, Morgan RO, Maslow K, Randazzo R, Moye JA, Odenheimer GL, Archambault E, Elbein R, Pirraglia P, Teasdale TA, McCarthy CA, Looman WJ, Kunik ME. A controlled trial of Partners in Dementia Care: veteran outcomes after six and twelve months. Alzheimer's research & therapy. 2014 Feb 28; 6(1):9.
- Bass DM, Judge KS, Snow AL, Wilson NL, Morgan R, Looman WJ, McCarthy CA, Maslow K, Moye JA, Randazzo R, Garcia-Maldonado M, Elbein R, Odenheimer G, Kunik ME. Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends. Journal of the American Geriatrics Society. 2013 Aug 1; 61(8):1377-86.
- Steiger-Gallagher K, Bass DM, Judge KS, Snow L, Wilson NL, Morgan RO, Walder A, Kunik ME. Satisfaction with dementia care. Federal practitioner : for the health care professionals of the VA, DoD, and PHS. 2012 Apr 1; 29(4):33-40.
- Bass DM, Judge KS, Snow AL, Wilson NL, Looman WJ, McCarthy C, Morgan R, Ablorh-Odjidja C, Kunik ME. Negative caregiving effects among caregivers of veterans with dementia. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2012 Mar 1; 20(3):239-47.
- Shub D, Bass DM, Morgan RO, Judge KS, Snow AL, Wilson NL, Walder A, Murry B, Kunik ME. Irritability and social isolation in dementia patients with and without depression. Journal of geriatric psychiatry and neurology. 2011 Dec 1; 24(4):229-34.
- Weber SR, Pirraglia PA, Kunik ME. Use of services by community-dwelling patients with dementia: a systematic review. American journal of Alzheimer's disease and other dementias. 2011 May 1; 26(3):195-204.
- Judge KS, Bass DM, Snow AL, Wilson NL, Morgan R, Looman WJ, McCarthy C, Kunik ME. Partners in dementia care: a care coordination intervention for individuals with dementia and their family caregivers. The Gerontologist. 2011 Apr 1; 51(2):261-72.
- Bradford A, Upchurch C, Bass D, Judge K, Snow AL, Wilson N, Kunik ME. Knowledge of documented dementia diagnosis and treatment in veterans and their caregivers. American journal of Alzheimer's disease and other dementias. 2011 Mar 1; 26(2):127-33.
- Shrestha S, Judge KS, Wilson NL, Moye JA, Snow AL, Kunik ME. Utilization of legal and financial services of partners in dementia care study. American journal of Alzheimer's disease and other dementias. 2011 Mar 1; 26(2):115-20.
- Kunik ME. Clinical: Partners in Dementia Care Improves Outcomes and Access to Services for Veterans and Caregivers. MIRECC/CoE Mental Health Innovations Newsletter. [Newsletter] 2016 May 13.
- Hilgeman MM, Martin TS, Kunik ME, Primetica B, Bass DM, Sexton T, Snow AL. Translation of a Care Consultation Intervention for Rural Individuals with Dementia and their Caregivers. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2014 Nov 7; Washington, DC.
- Kunik ME. Cognition and Dementia. Paper presented at: University of Montana College of Health Professions and Biomedical Sciences Montana Geriatric Education Center Annual Conference; 2014 Oct 13; Missoula, MT.
- Morgan RO, Snow AL, Bass DM, Judge KS, Wilson N, Maslow K, Liu CF, Fouladi NN, Walder A, Kunik ME. Cost Outcomes of Partners in Dementia Care. Poster session presented at: Baylor College of Medicine Quality and Safety Annual Conference; 2014 May 15; Houston, TX.
- Kunik ME. Interventions to Help Caregivers of Dementia Patients. Paper presented at: Beth Israel Medical Center Department of Psychiatry Monthly Meeting; 2013 Dec 12; New York, NY.
- Godwin KM, Morgan RO, Walder A, Bass DM, Judge KS, Wilson N, Snow AL, Kunik ME. Predictors of inpatient hospitalization among older Veterans with dementia. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2013 Nov 21; New Orleans, LA.
- Godwin K, Kunik ME, Mills W, Anderson J. The efficacy of interactive technology interventions for caregivers of persons with dementia. Poster session presented at: Society of Behavioral Medicine Annual Meeting and Scientific Sessions; 2013 Mar 20; San Francisco, CA.
- Archambault E, Randazzo R, Wilson NL, Kunik ME, Bass D, Judge K, Looman W, Moye J. Training for telephone administered dementia care coordination: Lessons learned. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2011 Nov 18; Boston, MA.
- Kunik ME. Partners in dementia care. Poster session presented at: VA National Mental Health Conference; 2011 Aug 23; Baltimore, MD.
- Boyle L, Miles Q, Borson S, Kunik M, Boustani M. Community-partnered services research: bridging the gap in dementia care. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2011 May 7; New Orleans, LA.
- Judge KS, Kunik ME, Wilson NL, Bass D, Snow AL, Murry B. Partners in dementia care: Descriptions and results of a care coordination intervention for individuals with dementia and their informal caregivers. Paper presented at: Gerontological Society of America Annual Scientific Meeting; 2010 Nov 22; New Orleans, LA.
- Shrestha S, Judge KS, Wilson NL, Moye JA, Snow AL, Kunik ME. Utilization of legal and financial services in partners of dementia care study. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2010 Nov 19; New Orleans, LA.
- Wilson N, Kunik ME. Understanding the scope of needs and actions in the partners in dementia care intervention. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2010 Nov 19; New Orleans, LA.
- Kunik ME. Partnering with community agencies: Is it possible? Paper presented at: VA Office of Patient Care Services Care Management and Social Work Services Meeting; 2010 Jul 13; Arlington, VA.
- Kunik ME, Bass D, Snow AL, Judge K, Wilson N, Morgan RO. Partners in Dementia Care: Implementing and Evaluating Coordinated VA and Alzheimer's Association Services. Paper presented at: Alzheimer's Association International Conference; 2008 Jul 28; Chicago, IL.
- Snow AL. Partners in Dementia Care: Diagnosis and Identification. Presented at: Gerontological Society of America Annual Scientific Meeting; 2007 Nov 1; San Francisco, CA.
Mental, Cognitive and Behavioral Disorders, Aging, Older Veterans' Health and Care, Health Systems
Treatment - Observational, Diagnosis
Caregivers – not professionals, Caregiving, Dementia, Patient outcomes