Dementia is a common, costly condition that often results in negative consequences and decreased quality of life for older primary care (PC) patients and their families. Dementia is both difficult to detect and to manage in PC. Failure to adequately address dementia care, however, can result in additional challenges such as poor adherence to treatments for co-morbid illnesses and higher overall health care utilization. While national and VA expert panel recommendations exist, rates of detection of dementia at all stages, and therefore access to good quality care, remain low. Recent VA system innovations such as Patient Aligned Care Teams (PACT) and Primary Care-Mental Health Integration (PC-MHI) provide an environment that is increasingly conducive to caring for patients with dementia and their families. For example, PC-MHI embedded mental health providers bring expertise to help address dementia detection and manage challenging behavioral aspects of these disorders. However, adoption of program improvements is dependent on the care environment into which they are implemented. Key stakeholders can provide essential information to address this issue. The present study sought to elicit stakeholder perceptions of PC for veterans with dementia in order to determine how national guidelines for dementia care can be implemented most successfully. This information aids in the identification of contextual issues that may limit PC for veterans with dementia, providing insights into ways the wide variety of VA resources can be best adapted to address the challenges of caring for this population.
The specific aims of this study include: (1) identify key stakeholder perceptions regarding positive and negative outcomes of detection, diagnosis, and management of dementia in PC at the patient, family, provider and system level; (2) identify antecedent, structure, and process factors in the health care system that serve as barriers and facilitators to positive outcomes for Veterans with dementia in PACT; and (3) identify ways PC-MHI providers can support detection and care for Veterans with dementia; identify training and support needs of PC-MHI providers preparing to address dementia care in PACT.
Semi-structured focus group and individual interviews were conducted with key stakeholders who use the VA health care system (including Older Veterans, Veterans with Dementia, and Family Caregivers) or work in this environment (including VISN and Medical Center Leadership, medical providers/other members of PACT, PC-MHI providers, and Geriatrics providers) at two sites (Buffalo and Minneapolis). A total of 79 participants were interviewed (staff = 36, Veterans = 23, family caregivers = 20). Specifically, 17 staff members participated in individual interviews, as did two dyads consisting of a Veteran recently diagnosed with dementia and a family caregiver; the remaining participants (N = 58) contributed their input through focus groups of like stakeholders. All interviews were digitally recorded and professionally transcribed. Transcripts of the interviews were analyzed following a directed qualitative content analysis.
Aim 1- Perceived Important Outcomes: Multiple stakeholders identified improvements in coordination of care resulting from PACT implementation. When care is well coordinated, both patient safety and quality of life were expected to improve. Stakeholders also identified improved family caregiver knowledge and emotional well-being as a positive outcome; these were seen as helping to achieve widely valued goals of maintaining functioning and independence as long as possible. Conversely, many participants cited premature limitation of independence was an outcome to be avoided. Staff participants frequently mentioned concerns about negative emotional reactions (from either patient or family) when the diagnosis is discussed. On a related topic, many stakeholders were concerned with the potential for stigma once the diagnosis of dementia was recorded. Some stakeholders described the potential for negative medical outcomes related to the Veterans' comorbid illnesses when the dementia diagnosis had not been made in a timely manner.
Aim 2 - Facilitators and Barriers to Improvement: Facilitators to improvement included the availability of coordinated, highly communicative teams (including the patient/family) due to PACT implementation. Education for both staff and caregivers was repeatedly cited; it was widely felt that most PC staff would benefit from additional dementia care related training. Few PC staff were familiar with VA and national recommendations for dementia care, but after seeing the recommendations, many mentioned the complexity of these guidelines and emphasized the need for distilled information to facilitate change in practice. Time constraints and limited resources were repeatedly described as barriers to change efforts. Further, multiple competing Quality Improvement initiatives were seen as taking time and attention away from each other. Finally, many participants cited a limited knowledge of available VA and community support resources as a barrier.
Aim 3 - PC-MHI Role: PC-MHI providers were seen as readily available resources to the PACT. Appropriate roles described included providing support for brief assessment, liaising with specialty MH, and to providing support to patients and family members regarding coping. PC-MHI providers cited the need for more training and for clinical resources such as guidance documents but emphasized the need for these to be brief.
This study improved our understanding of barriers and facilitators to high quality PC for Veterans with dementia. PACT and PC-MHI models of care were seen as important resources for Veterans with dementia and their family but staff participants repeatedly emphasized their need for distilled and brief dementia-specific guidance and clinical tools. Additionally, more PC-specific training was repeatedly requested. VA can address gaps in care by capitalizing on innovative methods of care delivery (PACT and PC-MHI) and by providing tailored, concise education and clinical resources to staff. Veteran and family input into these health care service adaptations will improve the likelihood of developing services that can be used by Veterans and their caregivers to improve the quality of care and of life for older Veterans with dementia. The study team will share these findings with VACO program office officials and the VA Center for Integrated Healthcare will take the lead in developing PC-MHI training and tools. More research is needed to identify the actual prevalence of perceived positive and negative outcomes of care and to identify the most efficient care delivery models to achieve Veterans' desired positive outcomes.
External Links for this Project
Grant Number: I21HX001029-01
- Vair CL, Wray LO, Beehler GP, McCarten JR. Engaging important stakeholders to assess gaps in primary care for dementia: Considering the forest as well as the trees. Paper presented at: Collaborative Family Healthcare Association Annual Conference; 2015 Oct 1; Washington, DC. [view]
- Wray LO, McCarten JR, Vair CL, Beehler GP. Identifying gaps in primary care for veterans with dementia: A qualitative study. Poster session presented at: Gerontological Society of America Annual Scientific Meeting; 2015 Nov 1; Washington, DC. [view]