Applies mental health service principles of active client involvement to older adults with dementia
Health and social care
Focus on positive attitude, enabling choice, decision–making, and supporting self-management for PWD and care to improve quality of life; stability and maintaining identity is important to PWD; the word “recovery” may be a barrier to acceptance of this approach in dementia care, but overall mental health recovery principles apply
To provide practical advice for clinicians to implement strategies for care planning as part of routine dementia care
Specialist healthcare
Involve family members/carers in care-planning discussion about decision-making and applying directives; a dynamic and continuous evolving process aligned with patient healthcare needs; a decision-maker who adheres to patient values; care-planning discussion should be documented
Communication between specialists with patients and their families is important for best quality of care; review care often; collaborate with other care providers including primary care practitioners, social workers, and nurse specialists
To present a navigational framework and clinical tools for dementia diagnosis and care planning for primary care physicians
Primary care
Physician goals: to improve patient care and communication with caregivers; use dementia toolkits to build tailored care plans that focus on the patient’s short-term and long-term needs and goals; some components can be performed by nonclinicians
To specify important principles for effective dementia care planning for home care
Home care
A care plan should accurately and sensitively identify patient needs; should be accessible to the right people at the right time; emphasise use of the APIE model (assess, plan, implement, and evaluate/review) to ensure all steps in the care planning process are followed; involve all care staff from the beginning, staff not involved from the start may not see the importance, leading to nonimplementation
To discuss care planning strategies involving the person with dementia and their care partners
Social care
Care planning questions should be individualised and under conditions that maximize success for the person with dementia (PWD); PWD and their caregivers should be involved in structured discussion about their best interests, decision-making involvement, care values, and preferences for care; persons with early to moderate dementia and their caregivers are able to engage fully in this process and report positive outcomes
To present the Alzheimer’s Association Expert Task Force recommendations and tools for implementation of cognitive assessment and care planning services
Specialist and primary care
Establish or confirm a diagnosis for a new or existing patient with symptoms of cognitive impairment. Discuss the plan with PWD and/or caregiver. Care planning can be provided by physicians, nurse practitioners, clinical nurse specialists, and physician assistants. Care plans should be easily understood, indicate who is responsible for what steps; specify an initial follow-up schedule
To provide recommendations for assessment and care planning derived from a literature review
Health and social care
Prioritise information about individual preferences, needs, values, routines, sources of joy, and personal meaning. Relationship-based care and positive social environments should be supported by identifying care partners and assessing their needs for support, information, and resources
National Collaborating Centre for Mental Health (2007) [2]
UK
To improve standards of care, ensure patient-centred approach, and reduce variations in care delivery and quality across the National Health Service (UK)
Health and social care
Care management for people with dementia delivers improved outcomes for both the person and their caretaker; variability in the models tested/researched makes it difficult to identify the most effective models or the individual components that contribute to effectiveness; characteristics that may be important to efficacy include long-term contact with older people and their care givers, smaller caseloads, and access to a significant range of other resources
To highlight the key characteristics of a PCSP (personalised care and support planning) for dementia and is aimed at primary care and commissioners who provide PCSP reviews as part of the quality outcomes framework (QOF) incentive scheme in primary care
Primary care
Primary care providers, care givers, and people with dementia should be involved. People with dementia should be central to developing and agreeing to their care plan and deciding who should be involved; focus on person with dementia’s (PWD) needs, what is important to them, their wider health, and wellbeing; outcomes/goals should be agreed in partnership with relevant professionals; sharable plan to review formally and informally
To provide guidelines for case managers in developing effective, individualised care plans for clients with progressive dementia in a home setting
Home care
Focus on nursing diagnosis and holistic and collaborative approach with healthcare providers. Professional case management should use best practice fundamentals, comprehensive and collaborative assessment, and communication between nursing, research, medical providers, and families to create individualised care plans
To provide dementia-specific information and practical guidance for assessors from home and community care assessment services to improve assessment, care planning, and service provision for people with possible dementia and their caretakers
Home care
HACC (home and community care) assessor, GP, caretaker, person with dementia should be involved in writing the care plan. A goal setting and problem solving approach; build on strengths, maximize autonomy, encourage involvement in personal care and household tasks, balance safety with autonomy, highlight preferences and dignity, preserve home environment and independence, and respect decisions; sharing of assessment and care plans when transitioning between care providers
To provide evidence-based and best practice standards, criteria, and guidelines for the operation and delivery of high-quality cognitive dementia and memory services (CDAMS) clinics
Memory clinic
Cognitive dementia and memory services (CDAMS) are responsible for initial care planning and short-term care plan implementation but not case management after diagnosis. Multidisciplinary case conferences should be used to develop the care plan. The care plan should be communicated with the general practitioner and other service providers
To test the effectiveness of partners in dementia care (PDC) on caregiver outcomes, with a larger, more representative sample and a refined PDC protocol than used in prior research
Health and social care caregivers of veterans with dementia n = 486 at the baseline n = 394 at 6 months n = 324 at 12 months
Significant improvements in unmet needs, role captivity, physical health strain, depression, caregiver support service use, and number of informal helpers, at 6 months; in unmet needs and relationship strain at 12 months. Most beneficial effects after 6 months and maintained for the length of the study. Study was not randomised within sites; therefore, intervention and comparison groups may have differed at the baseline
To test the effectiveness of partners in dementia care (PDC), a care coordination program integrating healthcare, community services, and support for veterans with dementia
Health and social care veterans with dementia n = 333 at the baseline n = 263 6 months n = 194, 12 months
Significant improvements in unmet needs, relationship strain, and depression at 6 months. Some nonsignificant improvement in embarrassment about memory problems. At 12 months, further significant reductions in unmet needs and embarrassment about memory problems. Participant attrition was significantly more likely to be participants from a minority group, more impaired in personal care, and more isolated at the baseline. 34.4% of veterans were too impaired to be interviewed at the baseline. Results, therefore, may not be representative of severely impaired, more vulnerable of disadvantaged veterans
To analyse whether types of providers and frequency of encounters are associated with higher quality of care within a coordinated dementia care management (CM) program for patients and caregivers
Health and social care medicare recipients with dementia, their careers and care managers n = 238 Followed over 18 months
Unclear what was included in the care plan or which specific healthcare practitioners were involved in the planning, outcome measures depended on care manager’s documentation. People with dementia and their caregivers were encouraged to participate in care planning
To compare the effectiveness and costs of telephone-only vs. in-person plus telephone support to deliver an evidence-based, coordinated care management program for dementia
Health and social care Latino PWD/caregiver dyads n = 151 (dyads) 6 months 12 months
Care planning was part of a larger case management strategy. Only 50% of participants completed a formal initial assessment. The intervention included a minimum of seven contacts primarily in-person or via telephone or mail. There were significantly more contacts for the telephone group (30.6) than the in-person group (22.3) (). Overall, the dementia care quality improved regardless of the delivery method
To investigate how caregivers perceive the clarity and ease of use of care to plan; how/why users perceive care to plan may assist in enhancing caregiving situations
Social care, online program caregivers of PWD n = 30 no follow-up
Unclear who is involved in the writing of the care plan other than caregivers and counsellors. The study focused on prototyping and testing an online tool called “care to plan” to support caregivers; caregivers found it easy to understand, and it was functional; positive perception of counsellor involvement. Barriers: need for additional features such as video instruction for caregivers; prototype had more barriers to use than the beta-version of the program. By describing, identifying, and prioritising support, care to plan (CtP) could help improve the care planning process for dementia caregivers
To provide a detailed description of a telephone-based care coordination intervention, partners in dementia care (PDC), for veterans with dementia and their family caregivers
Health and social care veterans with dementia: n = 93 caregivers: n = 90 12 months
The person with dementia was not always included in care planning. The study addressed important nonmedical care issues, such as understanding VA benefits, accessing community resources, and addressing caregiver strain. The program is feasible; further research needs to look at psychosocial and service utilization outcomes. Minor barriers to implementation: establishing protocols for sharing client information between partner organisations and rules surrounding confidentiality
To examine whether partners in dementia care (PDC) reduced direct veterans’ health administration (VHA) healthcare costs compared with usual care
Health and social care veterans with dementia/caregiver dyads n = 434 dyads 12 months prebaseline 6, 12 months
No significant difference between prebaseline and postbaseline log costs. Significant predictors of change in cost: greater impairment at the baseline was negatively associated with change in cost, greater function impairment at the baseline was positively associated with change in cost, and the VHA service priority group (where one is highest priority and eight is lowest priority); groups two to six had greater cost increases than groups seven and above. The strongest predictor of total cost was prebaseline total cost
To test the effectiveness of a comprehensive care plan specifically targeting reduced functional decline in people living with mild to moderate Alzheimer’s disease compared with usual care in memory clinics
Memory clinics people with Alzheimer’s disease n = 1131 12, 24 months
No clear involvement of the person with dementia, family, or caregivers in the care planning process. No difference or positive effect was found on functional decline between treatment and control groups in patients with mild to moderate Alzheimer’s disease. Future research should focus on more direct involvement of general practitioners
To describe a counselling-based care-planning intervention, SHARE (support, health, activities, resources, and education), for care dyads in early-stage dementia
Social care people with early-stage dementia; setting unclear 4 months n = 40 (dyads)
Difficult to determine if SHARE leads to positive outcomes for people with dementia or their care givers, no long-termfollow-up to determine if care plans were used and updated. Highlights a structured and systematic approach to care planning. Early-stage supportive strategies such as rapport building and initiating care-related discussions with care dyads may lead to better outcomes in decision-making. Anticipating barriers and addressing possible solutions in care planning discussion is mentioned but not evaluated in this study
To describe the clinical and operational aspects of the UCLA Alzheimer’s and Dementia Care program and its experience with the first 150 individuals
Health and social care people with dementia and care givers n = 150
Most common recommendations for initial care plans: referral to support groups (73%) and Alzheimer’s association safe return (73%), care giver training (45%), and medication adjustment (41%). People with dementia, caretakers, and physicians received the program well
To develop and implement a dementia care plan that offers training and support to caregivers, manages care transitions, and facilitates access to community-based services
Health and social care community-based patients with dementia and caretakers n = 519 no follow-up
Unclear who is involved in the writing of the care plan; gaps in dementia care: lack of support and training for caregivers, poor care transitions, and inconsistent access to community-based services; may inform policy and care management codes, serve as a national model for how dementia and other chronic diseases can be managed in partnership with primary care practices
To explore how care plans are compared with observations of home care received by people with dementia
Social care people with dementia n = 16 home care workers n = 17 100 hours of observations
Care plans contain useful information but do not always have specific information to support person-centred care tailored to client’s needs and can be vague, incomplete, or out of date. There were inconsistencies between care plans and care that was delivered. Lack of documentation was sometimes associated with failures in person-centred care
To investigate older people’s involvement in decision-making relating to care planning, focus on cognitive impairment and dementia
Health and social care social workers: n = 38 survey n = 21 interview older people: n = 788
55% of clients with dementia diagnosis were involved in care planning decisions; a lack of cognitive capacity, ageism, involvement of family, risk aversion, and time were barriers to involvement of people with dementia. Family members were assumed to be key decision-makers. Health and social care professional’s dependence on family caretakers contributed to exclusion of older people from involvement in decision-making
To investigate the experiences and views of staff in relation to care planning in dementia services in one National Health Service (NHS) provider
Healthcare nurses, social workers, occupational therapists, and psychologists from inpatient dementia assessment unit, dementia continuing care unit, and community mental health team n = 11
No mention of people with dementia or caretakers in care planning. Frontline staff should be involved in care planning, care planning documents must enable staff communication between themselves and others, and practice-based mentors could strengthen good practice in effective information sharing. Documentation of the care program approach was described as a barrier to achieving good practice by members of the community mental health team
To identify the nurse perceptions of their role in dementia care provision in primary care and barriers and enablers
Primary care nurses n = 36
General practice care plans are typically disease-focussed, but nurses rarely address cognition or dementia either in a separate care plan or with cognitive impairment considered across the care plans for other chronic conditions. Some nurses thought they might not be able to get accurate information from the person with dementia to care plan
To describe the conceptual design and implementation of the care pathway model for dementia (CARE-D)
Health and social care
The care pathway model for dementia (CARE-D) prescribes tailored care based on results from psychosocial and neuropsychological assessments. Focus on abilities and strengths, adapted over time as needs and abilities change. Psychosocial context is important. Consider: living situation, social supports, life stage, financial resources, individuals, and family’s pre-existing coping strategies. Goals: enhance quality of life by maximizing independence and safety, identify helpful modifications to activities and the environment, and provide emotional support
To determine the information needs of home health aides providing care for people with dementia at home
Home care home health aides n = 25
It is difficult for aides to follow the instructions for medication management. Home health aides are given limited information about the person with dementia’s care plan and are missing important clinical and social information. Information about behavioural and psychological symptoms of dementia is needed, not having it places aides at risk of abuse
