Psychosocial/Psychoeducational Interventions Shown to Delay or Postpone Care Transitions
The New York University (NYU) Caregiver Intervention
The NYU Caregiver intervention is a comprehensive support and counseling program for caregivers designed to postpone or prevent nursing home placement of persons with Alzheimer’s disease (Mittelman, Haley, Clay, & Roth, 2006). Key delivery characteristics of this intervention include an interprofessional care team, prompt communication of assessment findings, caregiver education and support in establishing goals of care. Comprehensive assessments at intake and follow-up provide information about the changing physical and emotional health and social support needs of the primary caregiver and the problems associated with dementia care. After the initial assessment two individual and four family counseling sessions are held with the primary focus being improving social support for the caregiver and helping the family understand the nature of dementia and the difficulties it presents. After the six counseling sessions, caregivers and participating family members are encouraged to telephone the counselor and to participate in the support groups whenever they need additional advice and support. Spousal caregivers in the intervention group experienced a 28.3% reduction in the rate of nursing home placement of the person living with dementia in comparison to the control group (p = .03) that received a limited intervention of project newsletters twice a year and a call from a counselor to “check in” every four months (Mittelman et al., 2006). In recent years, the model has been adapted to work with adult children (Gaugler, Reese, & Mittelman, 2013) and is in the process of being implemented on a larger scale (Mittelman & Bartels, 2014).
Prince Henry Hospital Dementia Caregiver Training Program
This 10-day program is delivered to persons with dementia during psychiatric hospitalization to delay nursing home placement. Dyads of persons living with dementia and a caregiver (most often spouses) were enrolled and both stayed in the inpatient setting to receive the 10-day intervention. Key intervention characteristics provided by an interprofessional team (focus of key clinician in brackets) to educate and support caregivers over the 10 days include: (a) a focus on reducing caregiver distress (social worker/occupational therapist); (b) combating isolation (psychiatrist); (c) decreasing guilt (psychiatrist); (d) supporting new ways of thinking (psychologist/occupational therapist); (e) coping skills (psychologist/occupational therapist); (f) fitness (physiotherapist/dietician); (g) medical assessment (psychiatrist); (h) review of community services (welfare officer); (i) planning for goals of care (psychiatrist); and (j) behavioral symptoms (entire team). The intervention demonstrated delays in institutionalization in participants for persons living with dementia in comparison to study participants who were randomly assigned to only receive a respite stay at the hospital (p = .04) (Brodaty, Gresham, & Luscombe, 1997).
Goals of Care Intervention
This is a two-session intervention delivered to decision makers of persons living with dementia in the nursing home setting (Hanson et al., 2016; Hanson et al., 2017). Caregivers for the person living with dementia first view an 18-min “Goals of Care” decision aid video followed by a structured discussion with the interprofessional teamat the nursing home. The decision aid video provides a variety of information on: dementia, supporting function, improving comfort, goals of prolonging life, treatments consistent with each care goal, and how to prioritize goals. Each decision makers then received a print copy of the decision aid and guide entitled “Questions to Consider in Care Planning.” The caregivers in the control group were shown a video about dementia and had a traditional care plan meeting with nursing home staff. All staff at the nursing homes were provided with training on how to have goals of care discussions. Persons living with dementia in the intervention sites had half as many hospital transfers (e.g., emergency department or hospitalization) compared to those in the control condition (p = .02) (Hanson et al., 2017). Family members in the “Goals of Care” group rated the quality of communication higher than the control group (p = .05).
Care Coordination Interventions Shown to Postpone Transitions in Individuals Living With Dementia
The Transitional Care Model (TCM)
The TCM is a rigorously tested comprehensive advanced practice nurse led model of care that starts in the hospital and continues through skilled nursing facilities and back to the community (Naylor et al., 1994; Naylor et al., 1999; Naylor et al., 2004). The TCM focuses on person-centered care; education and promotion of self-managed care; continuity, collaboration, and care coordination with all members of the interprofessional team (Hirschman, Shaid, McCauley, Pauly, & Naylor, 2015). In a recent comparative effectiveness trial, the hospital to home TCM was tested against other lower dose evidence-based hospital only interventions each designed to improve care transitions for persons living with cognitive impairment and their family caregivers. The TCM intervention consisted of visits by the advanced practice nurse in the hospital and at home to discuss goals for care and establish the care plan; a collaborative visit with the older adult, caregiver and at least one of their physicians; telephone calls and advanced practice nurse availability 7 days a week for education and support (Hirschman et al., 2015). The TCM supplemented care during the hospitalization, supported the discharge planning process and substituted for skilled home care nurses, when appropriate. The advanced practice nurses completed additional training on managing dementia and delirium in addition to the TCM educational training. Older adults who received the TCM had a longer time to first rehospitalization or death compared to the lower-dose hospital only interventions (TCM: 83 days; RNC: 58 days; ASC: 33 days) (McCauley, Bradway, Hirschman, & Naylor, 2014). The 30-day rehospitalization rates in this trial for the TCM group (9%) were half as much as those in the lower dose hospital only intervention groups (19% and 22%) (Naylor et al., 2014). Rehospitalization or death was accelerated for both the ASC and RNC groups by a factor of 1.75 and 1.93, respectively, in comparison to the TCM group (p = .05, p = .02, respectively) (Naylor et al., 2014). Findings from this trial were similar to prior randomized trials and comparative effectiveness research TCM studies with cognitively intact older adults (Naylor et al., 1999; Naylor et al., 2004; Naylor et al., 2013).
MIND at Home
The MIND at Home intervention is 18 months of care coordination designed to link persons living with dementia and their caregivers to community-based agencies, medical and mental health care providers, and community resources (Samus et al., 2014). MIND at Home is delivered by an interprofessional team who conduct comprehensive in-home dementia-related needs assessments and provide individualized plans to establish goals of care and implementation. The team uses six basic care strategies: resource referrals, attention to environmental safety, dementia care education, behavior management skills training, informal counseling, problem-solving, as well as on-going monitoring, assessment and planning for emergent needs. Each component of the intervention is based on best practice recommendations and evidence from prior research, and is combined for maximum impact. Results from the MIND at Home trial support that a home-based dementia care coordination included longer time to transition from home or death (remained in their home 51 days longer, p = .02) and reduced risk of leaving the home by 37% in comparison to the control group (Samus et al., 2014). More recent results demonstrated that MIND at Home participants had increased use of dementia-related outpatient medical care and nonmedical supportive community services, a combination that may have helped participants remain at home longer (Amjad et al., 2017).
Partners in Dementia Care (PDC)
The PDC model is a coaching model designed to support people living with dementia and their caregivers to generate an action plan that is in line with their preferences and goals for care (Bass et al., 2014; Judge et al., 2011). This model has been tested in the Veterans Administration (VA) health system. In a recent trial, each veteran in the PDC group worked with a care coordinator (a social worker, nurse, or other helping profession degreed individual) to develop the content and steps to be addressed in the goals of care (Bass et al., 2015). Copies of action plans were provided in writing by mail to the veteran and their family member and the detailed plan was kept in the VA medical record. The assessment and care plan were revisited on an ongoing basis. In comparison to the usual care group, the veterans in the PDC group with high baseline behavioral symptoms had 32.0% fewer hospitalizations and veterans in the PDC group with greater cognitive impairment at 6 months after the start of the intervention had 26.9% fewer hospitalizations (p = .01, both) (Bass et al., 2015). There were 28.6% fewer emergency department visits among veterans with more behavioral symptoms at 6 months in the intervention group in comparison to the unusual care group (p = .02) (Bass et al., 2015).
Geriatrics Team Intervention
This intervention consists of four systematic, interprofessional assessments conducted by a team of clinicians including a geriatrician or geriatrics advanced practice nurse, a physical therapist, a dietitian, and a medical social worker. The assessment was completed during the ﬁrst 9 months of the person living with dementia moving to the assisted living. The geriatrician and geriatrics advanced practice nurse conducted medical and cognitive evaluations. The physical therapist evaluated physical function, gait, and balance and assessed the need for ongoing physical therapy and assistive devices. The dietitian evaluated nutritional status and provided dietary recommendations. The medical social worker assessed guardianship issues, long-term planning, and the psychosocial adjustment of the residents and families. Following assessments, the team, together with staff nurses, meet bimonthly to discuss the most recent assessments and establish goals of care with the primary care physician, the Assisted Living director, and families. Members of the team were available for in-person or telephone consultation with Assisted Living staff members throughout the study. While not statistically significant, individuals who received the intervention had a reduced risk of any unanticipated transition (13%), permanent relocation to a nursing facility (11%), emergency department visits (12%), hospitalization (45%) in comparison to persons living with dementia in the assisted living setting who received usual care (Bellantonio et al., 2008).
With this review, we sought to summarize current evidence about interventions that improve transitions in care for persons living with dementia and their caregivers. In our review of the seven evidence-based interventions (see Table 1) that included transitions in persons living with dementia, successful interventions were those that included five key elements: (a) educating the individual and caregiver about likely transitions in care and ways to delay or avoid the transition; (b) providing timely communication of information among everyone involved, including the individual, caregiver and care team; (c) involving the individual and caregiver in establishing goals of care (person-centered); (d) comprising a strong collaborative interprofessional team; and (e) implementing evidence-based models of practice. Each evidence-based intervention targeted the individual living with dementia and a family caregiver and required the person or persons delivering the intervention to have a specific skill set (e.g., counselor, nurse, physician) or complete educational trainings to develop a set of competencies to work with the population, which sets these interventions apart from other transitional care interventions with cognitively intact older adults.
These key elements are in line with recent systematic reviews of best practices for care transitions for frail older adults without dementia (Allen, Ottmann, & Roberts, 2013; Chenoweth, Kable, & Pond, 2015; LaMantia, Scheunemann, Viera, Busby-Whitehead, & Hanson, 2010; Pimouguet, Lavaud, Dartigues, & Helmer, 2010; Ray, Ingram, & Cohen-Mansfield, 2015; Somme et al., 2012; Tam-Tham, Cepoiu-Martin, Ronksley, Maxwell, & Hemmelgarn, 2013). These reviews highlight the missing of persons living with dementia and their caregivers. Challenges that are unique to transitions among persons living with dementia include the need for dementia care expertise among the team, the reliance on the caregiver as an essential member of the team, the need for caregiver education and preparation, and the challenges of behavioral symptom management as part of the goals of care conversation. Nonetheless, these reviews suggest that the best outcomes for persons at high risk for care transitions, such as individuals living with dementia, are associated with care that is person-centered in that is coordinated, responsive, and tailored to individual needs and preferences. Thus, best practice recommendations involve successfully connecting medical, social and supportive care professional and caregivers over the course of dementia to achieve person-centered outcomes in transitions between care settings.
Moreover, while evidence-based transitional care intervention studies aimed at preventing transitions such as hospitalizations or rehospitalizations are numerous, our findings suggest that for most of these studies persons living with dementia were included in only a limited way or no detailed evidence of the impact of these interventions on transitions in care for persons living with dementia was published at the time of this search (through January 2017). It is likely that interventions such as Care Transition Intervention (Coleman, Parry, Chalmers, & Min, 2006); INTERACT II, (Ouslander, Bonner, Herndon, & Shutes, 2014); BOOST (Williams et al., 2014); and Project RED (Jack et al., 2009; Mitchell et al., 2014) are being used and adapted or modified for persons living with dementia in real world settings. Going forward, rigorous assessment and sharing of transitions outcomes from these efforts for persons living with dementia is needed. More attention needs to be put into well-conducted studies to understand the barriers and facilitators of adapting these interventions in dementia care practice.
Finally, most persons living with advanced dementia eventually move to long-term care settings, and for many this is the setting of death. However, there was a notable gap in the reviewed literature in terms of studies that examined transitions to palliative or end-of-life care. One Cochrane review on respite care found no evidence supporting the role of respite in delaying time to institutionalization (Lee & Cameron, 2004). Nonetheless, decisions about transitions should also be guided by the advance directives of the person living with dementia; if the individual or their surrogate decision maker so wishes, no transition may be the best decision. Any transition in care as life draws to a close is intrusive, stressful, and can negatively affect quality of life.
While we aimed for a transparent, systematic, and pragmatic approach in this review, our conclusions are limited by factors common to literature reviews including the selection of search terms, the sources searched, and the inclusion criteria. The interventions included in this review represent the breath of approached, but may not represent the depth of evidence in transitional care interventions for persons living with dementia. For example, we did not assess each individual intervention for risk of bias or effect estimates. In addition, several strategies that have been suggested for preventing unnecessary hospitalizations were not found in our review. These include adaptations to the living environment and increasing participation in activities (Spijker et al., 2008). Our recommendations to follow are therefore grounded on the existing, albeit limited, evidence base.
In the course of the review, five themes emerged and were used to develop the following recommendations to guide transitional care interventions for persons living with dementia:
- Prepare and educate persons living with dementia and their family caregivers about common transitions in care.
- Preparing and educating persons living with dementia and their caregivers about transitions in care should occur before, during and after transitions. Because family caregivers are integral to the care of individuals living with dementia, it is important to understand their need for information about common transitions, including across care settings, such as home to hospital or skilled nursing facility, nursing home to emergency department; within care settings, such as from an emergency department to an intensive care unit; or from one team of clinicians or care providers to another. For example tools are publically available from the Alzheimer’s Disease Education and Referral Center (ADEAR) NICHE – Nurses Improving Care for Health System Elders and the Alzheimer’s Association that can be provided to persons living with dementia and their caregivers to help them prepare for the possibilities of hospitalization (Alzheimer’s Disease Education and Referral Center, 2017,,NICHE, 2017b; NICHE, 2017c) and transition to rehabilitation or long-term care settings such as nursing homes or assisted living (NICHE, 2017a).
- Ensure complete and timely communication of information between, across and within settings.
- Individuals living with dementia are frequently transferred across facilities without essential clinical information. Careful attention is essential to ensure a safe “handoff.” Finding timely and standardized ways to share medical records and advance care planning forms between patients, caregivers, and providers throughout transitions is needed (Borson et al., 2016). Linking electronic health records across care settings also offers this potential. Open communication between providers, across settings, and within organizations or clinical practices is essential (both written and verbal). Assisting persons living with dementia and their caregivers in accessing and sharing information in a person- and family-centered way can help to avoid poor outcomes often associated with transitions in care (e.g., rehospitalizations, emergency department visits, medication errors, and caregiver stress). Information must be clinically meaningful, appropriate in amount; it should be communicated by a method useful to the receiving site of care. Achieving these objectives by using standardized forms or standardized approaches to communicate hand-offs can increase the accuracy of information and minimizes risk of error.
- Evaluate the preferences and goals of the person living with dementia along the continuum of transitions in care.
- Revisiting preferences and goals for care, including treatment preferences, advance directives, and social and living situation, while the person living with dementia can participate is essential during transitions in care. If a person living with dementia is unable to participate, including caregivers or others who know the person well is vital. After any hospitalization or other significant change requiring a transition in care or level of care, a review and reassessment of the preferences and goals of the person living with dementia should include an assessment of safety, health needs, and caregiver’s ability to manage the needs of the person living with dementia. This requires improved competencies of the entire interprofessional team in conducting goals of care conversation, and more effective processes to ensure appropriate assessments are performed before the decision to move a person with dementia to another setting of care is made.
- Create strong interprofessional collaborative team environments to assist persons living with dementia and their caregivers as they make transitions.
- Creation of a strong interprofessional collaborative team environment to support the person living with dementia throughout transitions in care is crucial. Each member of the team needs to have a basic set of competencies in the fundamentals of caring for individuals living with dementia at all stages and the needs of family caregivers (Burke & Orlowski, 2015). All of the evidence-based interventions described here were specifically designed to address the challenges for individuals living with dementia and other complex chronic conditions as well as the needs of their family caregivers. For example, in the MIND study case managers were trained in dementia care management over a 4-week period of time (Amjad et al., 2017; Samus et al., 2014), in another study, Naylor and colleagues (2014) developed a set of web-based education modules focused on how to manage the care needs of older adults living with dementia and their family caregiver as they transition from the hospital to home (McCauley et al., 2014). Furthermore, this type of work requires continuity of the same clinicians (whenever possible) to support the person living with dementia and their family as they move between providers and across setting. Every member of the health care team must be accountable and responsive to ensure the timely and appropriate transfer of responsibility to the next level or setting of care. Optimally clinicians from the sending site of care should maintain responsibility for individuals with dementia until the caregivers at the receiving site assume clinical responsibility.
- Initiate/Use evidence-based models to avoid, delay, or plan transitions in care.
- The seven evidence-based models of care in this review focused on avoiding unnecessary transitions (such as hospitalization, or emergency department visits), delaying or supporting placement in residential care settings (such as nursing homes or assisted living communities). Although many evidence-based models have excluded or limited the inclusion of persons living with dementia, adaptations of these models should be considered whenever possible to improve transitions. Among the interventions that targeted hospitalizations and emergency department visits, it is important to note that these events are often tied to nondementia-related conditions. Furthermore, targeting avoidable hospitalizations or rehospitalization for persons living with dementia has the potential to interrupt poor outcomes more common with this population such as risk of delirium (Fick, Steis, Waller, & Inouye, 2013; Watkin, Blanchard, Tookman, & Sampson, 2012) and falls (Meuleners, Fraser, Bulsara, Chow, & Ng, 2016). As evidence-based models of care are adapted and modified to meet the needs of persons living with dementia transitioning between, across and within settings of care it is critical to share the findings from these adapted transitions in care models.
Taken as a whole, research on transitional care interventions for persons with dementia is in an early development stage. Most research on transitions in care has not focused on older adults with dementia, and our review revealed few trials testing interventions to postpone/prevent or reduce negative outcomes associated with care transitions specific to persons living with dementia. Nonetheless, the shift in dementia care from institution to community means that interventions to support or prevent/postpone transitions in care will continue to be common for persons living with dementia. At the same time, evidence is mounting that efforts to ensure continuity of care for individuals with dementia during care transitions results in improved outcomes for the individual and their caregivers.
As the population of individuals living with dementia continues to grow for the near future finding ways to best meet their needs and more fully understand care transitions from diagnosis to death are needed. Recommendations for best practices for transitions of care for high risk older adults currently exist in Clinical Practice Guidelines such as Transitions of Care in the Long-Term Care Continuum and Acute Change of Condition in the Long-Term Care Setting (e.g., INTERACT) (American Medical Directors Association (AMDA), 2010; Ouslander et al., 2014), and documents available through the National Transitions of Care Coalition (NTOCC). While these recommendations offer promising approaches for reducing unnecessary transitions (Ingber et al., 2017), this evidence needs to be expanded to consider if it meets the unique needs of persons living with varying stages of dementia and their caregivers.
It takes a team to prevent avoidable transitions and to safely manage necessary transitions in care for persons living with dementia. The evidence supports that when health care team members effectively communicate with each other across care settings and with caregivers, persons with dementia can be safely transitioned with minimal complications. When caregivers are educated about, and involved in, care transition decisions rehospitalizations rates and lengths of stay decline and nursing home admissions can be delayed (Gitlin & Wolff, 2011).
Putting these five recommendations into practice will require a shift in current health care policies and practices. The growing need for services that reduce unnecessary transitions or support necessary transitions can act as drivers for program innovation. For example, most health care settings require infrastructure support to involve caregivers in care transitions, and is at the heart of new initiatives such as the AARP initiated “Caregiver Advise, Record, Enable (CARE) Act” (AARP, 2014). In addition, there is a need to compensate the health care team for the required time to adequately assess the needs of both persons living with dementia and caregivers or provide the necessary education to caregivers (Alzheimer’s Association, January 2017). While implementing evidence-based transitional care interventions offers the potential for cost savings by avoiding care complications, this has yet to be realized or captured. As a result, changing reimbursement structures to support evidence-based transitional care will require policies (such as the “Health Outcomes, Planning, and Education [HOPE] for Alzheimer’s Act” S. 857/H.R. 1559) that recognize the essential role of caregivers and the potential benefits for persons with dementia, their caregivers and society.