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Care Interventions for People With Dementia (PWD) and Their Caregivers

Key Questions Draft

Open for comment through Dec 3, 2018

Preliminary Key Questions and PICOTS

We propose a set of key questions (KQ) that address the effects of interventions for PWD and their caregivers. The term "PWD caregiver" refers to frontline, informal/unpaid caregivers and formal/paid caregivers of PWD.

Treatment Interventions for Behavioral and Psychological Symptoms of Dementia (BPSD) in People With Dementia (PWD)

  • KQ1: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on people with dementia (PWD) outcomes for care interventions aimed at treating the behavioral and psychological symptoms of dementia (BPSD) in PWD?
    • KQ1a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ1b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ1c: Which intervention characteristics or components are associated with effectiveness?
  • KQ2: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD Caregiver outcomes for care interventions aimed at treating BPSD in PWD?
    • KQ2a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ2b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ2c: Which intervention characteristics or components are associated with effectiveness?

Treatment Interventions for Quality of Life, Function, or Non-BPSD Symptoms in PWD:

  • KQ3: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD outcomes for care interventions aimed at treating quality of life, function, or non-BPSD symptoms in PWD?
    • KQ3a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ3b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ3c: Which intervention characteristics or components are associated with effectiveness?
  • KQ4: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD Caregiver outcomes for care interventions aimed at treating quality of life, function, or non-BPSD symptoms in PWD?
    • KQ4a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ4b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ4c: Which intervention characteristics or components are associated with effectiveness?

Interventions for PWD Caregivers:

  • KQ5: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD outcomes for care interventions aimed at supporting the well-being (e.g. quality of life and health outcomes) of the PWD Caregivers?
    • KQ5a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ5b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ5c: Which intervention characteristics or components are associated with effectiveness?
  • KQ6: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD Caregiver outcomes for care interventions aimed at supporting the well-being (e.g. quality of life and health outcomes) of the PWD Caregivers?
    • KQ6a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ6b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ6c: Which intervention characteristics or components are associated with effectiveness?
  • KQ7: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD outcomes for care delivery interventions aimed at PWD Caregivers?
    • KQ7a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ7b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ7c: Which intervention characteristics or components are associated with effectiveness?
  • KQ8: What are the efficacy, effectiveness, comparative effectiveness, and harms or unintended consequences on PWD Caregiver outcomes for care delivery interventions aimed at PWD Caregivers?
    • KQ8a: Do outcomes differ by PWD characteristics? If so, how?
    • KQ8b: Do outcomes differ by PWD Caregiver characteristics? If so, how?
    • KQ8c: Which intervention characteristics or components are associated with effectiveness?

Dissemination and Implementation Research:

  • Guiding Question 1: What is the empirical state of the evidence on interventions aimed at implementing the KQs1–8 interventions that have at least low-strength evidence for "real-world" effectiveness or comparative effectiveness (i.e., NIA Behavioral Research Stage Model Stages 3–4)?

Table 1 presents the population, intervention, comparators, outcomes, timing, settings, and study designs that further specify the key questions.

Table 1. Preliminary PICOTs

 

KQ1 - 4: Interventions Aimed at PWD

KQ5 – 8: Interventions Aimed at PWD Caregivers

Population

  • Patient:
    • PWD, including individuals with Alzheimer's disease and related dementias:
      • Lewy body dementia
      • Frontotemporal dementia
      • Vascular cognitive impairment/dementia
  • Patient Subgroups:
    • Age, sex, race/ethnicity, education, socioeconomic status, dementia severity [e.g. stage of dementia (early stage, moderate, or severe), level of cognitive impairment rate of cognitive decline], or family/household characteristics, setting type
  • PWD Caregivers–Types:
    • INCLUDE: Certified Nursing Assistants (CNAs), Home Health Aides; Auxiliary Workers; Spouses, Family, Friends, and Other Informal Caregiver
  • PWD Caregiver Subgroups:
    • Age, sex, race/ethnicity, family history of dementia, risk factor status, education, socioeconomic status, skill, training, general health status, setting type
    • Relationship to patient

Interventions**

  • Dementia Care Interventions for PWD delivered by PWD Caregivers
    • Interventions will focus on improving PWD health outcomes and experiences/satisfaction, and/or utilization of services
    • PWD Caregivers include:

Formal and Informal caregivers (e.g., Including: Certified Nursing Assistants (CNAs), Home Health Aides; Spouses, Family, Friends, and Other Informal Caregivers;

  • Intervention Characteristics:
    • Involvement with Technology
    • Involvement with Training
    • Intervention frequency, duration, intensity, complexity, type
    • When in the disease continuum the intervention is completed

(See Below**)

  • EXCLUDED–Treatment interventions for conditions other than dementia. (e.g. CPAP)
  • Interventions for PWD Caregivers:
    • Interventions will focus on improving caregiver physical and emotional health outcomes including interventions for targeted caregiver problems, such as treating insomnia, reducing caregiver stress, decreasing caregiver negative affect, improving emotion regulation, decreasing caregiver burden, improving communication with care recipient, etc.
    • Care Receivers of caregiving are PWD, including individuals with Alzheimer's disease and related dementias:
      • Lewy body dementia
      • Frontotemporal dementia
      • Vascular cognitive impairment/dementia
  • Intervention Characteristics:
    • Involvement with Technology
    • Involvement with Training
    • Intervention frequency, duration, intensity, complexity, type
    • Caregiver only versus dyadic focus
    • When in the disease continuum the intervention is completed

(See Below**)

  • EXCLUDED–Formal training for professional degrees, certificates, or continuing education.

Comparator

  • Inactive Comparator: No intervention, usual care, waitlist, attention control
  • Active Comparator: Different intervention
  • Inactive Comparator: No intervention, usual care, waitlist, attention control
  • Active Comparator: Different intervention

Outcomes:

KQ1, 3: PWD Outcomes:

  • Quality of life outcomes:
    • Quality of life; Subjective well-being
    • Burden of care (including time and financial burden)
    • Satisfaction
  • Utilization of Healthcare Service outcomes:
    • Admission to nursing home
    • Access to care and services
    • ICU and ER usage
    • Primary, Specialty, Long-term Care usage
  • Palliative/Hospice:
    • Comfort during dying process
    • Concordance with preferred location of death
  • Health outcomes:
    • Psychological health (e.g., depression – CES-D)
    • Neuropsychiatric symptoms (including aggression and agitation)
    • ADL (activities of daily living), IADL (instrumental activities of daily living), ability to care for one's self
    • Weight loss
    • Sleep problems
    • Use of restraints and anti-psychotics
    • Quality of care and services (overutilization of unnecessary antibiotics, etc.)

KQ2, 4: PWD Caregiver Outcomes:

  • Quality of life outcomes:
    • Quality of life; Subjective well-being
  • Burden of care (including time and financial burden)Health outcomes:
    • Psychological health (e.g., depression – CES-D)
    • Sleep problems, weight loss due to stress

ALL KQs: Unintended consequences, including elder abuse

KQ5, 7: PWD Outcomes:

  • Quality of life outcomes:
    • Quality of life; Subjective well-being
    • Burden of care (including time and financial burden)
    • Satisfaction
  • Utilization of Healthcare Service outcomes:
    • Admission to nursing home
    • Access to care and services
    • ICU and ER usage
    • Primary, Specialty, Long-term Care usage
  • Palliative/Hospice:
    • Comfort during dying process
    • Concordance with preferred location of death
  • Health outcomes:
    • Psychological health (e.g., depression – CES-D)
    • Neuropsychiatric symptoms (including aggression and agitation)
    • ADL (activities of daily living), IADL (instrumental activities of daily living), ability to care for one’s self
    • Weight loss
    • Sleep problems
    • Use of restraints and anti-psychotics
    • Quality of care and services (overutilization of unnecessary antibiotics, etc.)

KQ6, 8: PWD Caregiver Outcomes:

  • Quality of life outcomes:
    • Quality of life; Subjective well-being
  • Burden of care (including time and financial burden)Health outcomes:
    • Psychological health (e.g., depression – CES-D)
    • Immune function
    • Sleep problems, weight loss due to stress

ALL KQs: Unintended consequences, including caregiver PTSD

Timing

  • At least 2 weeks for acute episodes of behavioral symptoms (e.g. insomnia, aggression, agitation) and hospice care
  • At least 3 months for all other outcomes
  • At least 2 weeks for acute episodes of behavioral symptoms (e.g. insomnia, aggression, agitation) and hospice care
  • At least 3 months for all other outcomes

Setting

Examples:

  • Home
  • Home health care
  • Adult day care
  • Acute care settings
  • Social service agencies
  • Nursing homes
  • Assisted living
  • Memory care units
  • Hospice
  • Rehab Centers/ Skilled Nursing Facilities

Examples:

  • Home
  • Home health care
  • Adult day care
  • Acute care settings
  • Social service agencies
  • Nursing homes
  • Assisted living
  • Memory care units
  • Hospice
  • Rehab Centers/ Skilled Nursing Facilities

Studies:

  • Must have a comparator arm, unless system-level intervention with interrupted time series analysis
  • English Language
  • Must have a comparator arm, unless system-level intervention with interrupted time series analysis
  • English Language

Abbreviations: CES-D = center for epidemiologic studies depression scale; CPAP = continuous positive airway pressure; ICU = intensive care unit; ER = emergency room; KQ = key questions; PICOTS = populations, intervention, comparator, outcome, timing, setting; PTSD = post-traumatic stress disorder; PWD = people with dementia
**Examples of included interventions. Essentially, interventions are included unless specifically stated as excluded. (Note that the list is not divided by KQ. Some interventions are aimed at both PWD and PWD Caregivers; some are aimed at one or the other):

  • Memory evaluation
  • Driving evaluation
  • Meaningful activities
  • Medications supervision
  • Skill training, including for CNAs, home health aides, and/or informal caregivers
  • Advance care planning
  • Behavior management
  • ADL support
  • Home modifications
  • Wandering and fall risk management
  • Palliative care
  • Caregiver support and support groups
  • Sensory-based interventions
  • Training for CNAs, home health aides, and/or informal caregivers
  • Changing the physical environment/environmental modification across settings (e.g., in hospitals, in people's homes)
  • Improving acute care systems
  • Care coordination
  • Mindfulness training
  • Interventions focused on the development of Dementia Friendly Training (e.g., training of police officers in local communities)
  • Wandering and Wayfinding
  • Reminiscence Therapy
  • Prompts and Multicomponent Interventions
  • Engagement Interventions
  • Exercise Interventions
  • Psychoeducational
  • Art therapy
  • Dance movement therapy
  • Cognitive behavior therapy
  • Counseling/care management (including emotionally focused couples therapy)
  • General support
  • Respite
  • Training of PWD
  • Multicomponent interventions
  • Psychosocial interventions/studies
  • Caregiver support groups
  • Therapeutic counseling
  • Support interventions
  • Cognitive reframing (changing caregivers' maladaptive behaviors or beliefs)
  • Web-based multimedia intervention
  • Caregiver-therapist e-mail support
  • Educational and peer-support website
  • Bereavement support

 

Figure 1 shows the location of the key questions in a traditional analytic framework.

Figure 1. Analytic framework for care interventions for PWD and their caregivers

Figure 1 is the analytical framework describing the flow of people with dementia (PWD) and their caregivers through care intervention processes. PWD and caregivers receive nondrug care interventions leading to intermediate outcomes usch as improvements in sleep, quality of care and services, and use of restraints or antipsychotics for PWD. Interventions may have associated harms or unintended consequences. Final health outcomes for both caregivers and PWD include improvements in quality of life or other health outcomes. In addition PWD outcomes might include improvements in function, utilizaiton of healthcare services, and hospice outcomes such as concordance with preferred location of death. Outcomes may differ by PWD baseline characteristics (such as age, sex, education, or care setting) or caregiver baseline characteristics (such as age, sex, skill and training, general health, or patient relationship).

 

Abbreviations: ADL = activities of daily living; IADL = instrumental activities of daily living; KQ = key questions; PWD= people with dementia; SES = socioeconomic status

 

Background

Given the rising rates of dementia in the United States, a summary of the available evidence for care interventions for people with dementia (PWD) and their formal and informal caregivers is urgently needed. The National Institute on Aging (NIA) has commissioned such a summary to be produced by the Evidence-based Practice Center Program at the Agency for Healthcare Research and Quality (AHRQ) in collaboration with the National Academies of Science, Engineering, and Medicine (NASEM). The goal is to understand the evidence base for effective care interventions and the possibility of broad dissemination and implementation.

Dementia is a clinical syndrome that affects about 10 percent of older U.S. adults.1,2 It is characterized by an acquired cognitive deficit that interferes with a person's independence in daily activities.3 Dementia reduces an individual's quality of life, burdens caregivers, increases institutionalization, and is costly to families and society.4 Agitation, aggression, and other behavioral disturbances are common,5 especially late in the disease course.

Dementia has no known medical cure. Although drug and nondrug interventions are both available to treat symptoms, support function, and improve quality of life, nondrug interventions are recommended as first line treatments for behavioral symptoms over antipsychotics and other medications.6 Nondrug interventions are generally presumed safe, but few trials have reported information on harms or other unintended consequences of the interventions.

Care for PWD is costly, and more than 90 percent of community-residing older adults who need dementia care rely on the help of family members.7 In 2017, informal (that is, unpaid) caregivers for PWD provided an estimated 18.4 billion hours of unpaid care at an economic value of $232.1 billion, and two-thirds of informal caregivers are women.8 Caring for a PWD is a complex and challenging undertaking that can be stressful and a source of physical and mental health consequences for the caregiver. Therefore, many research teams have developed and tested interventions designed to support the health and well-being of the informal caregiver, such as social support, therapeutic counseling, skills training, respite, or a combination of approaches.9 Many paid formal caregivers also lack adequate training and support for this difficult work. A recent NASEM report recommended an increase in federal requirements for direct care worker training—from 75 hours to 120 hours—and an increased focus on knowledge and skills related to caring for PWD.10 

Care interventions can be complicated and multifaceted. Interventions aimed at improving care for PWD may also benefit their caregivers, and vice versa. Some multicomponent interventions focus on the dyad of both the caregiver and the care recipient, and both may benefit. Figure 2 illustrates a conceptual map for general links between PWD care and the possible intervention targets and anticipated effects. The orange arrows show the relationship between PWD receiving care and the effects on the caregiver, and the blue arrows show care intervention paths. Within the scope of this review, care interventions run the gamut from the care that is delivered to the PWD, to care and support provided to the caregivers, to improving the way care is delivered.

Figure 2. Conceptual model of care interventions for people with dementia and their caregivers

Figure 2 is an illustration of a conceptual model of care interventions for people with dementia and their caregivers. The map shows general links between PWD care and the possible intervention targets and anticipated effects. Health care organizations, formal paid caregivers, informal caregivers, and peoplw with dementis may all be targets of interventions designed to improve care, or how that care is delivered. Interventions may also target the dyad of the PWD and their informal caregiver. Two arrows pointing from the PWD back to the caregivers show the relationship between PWD receiving care and potential effects on the caregiver. Other arrows show the multiple possible paths of care interventions that ultimately are intended to support the caregiver and improve care for the PWD. All of these paths will impact outcomes for formal and informal caregivers and PWD.

A recent report for the Office of the Assistant Secretary for Planning and Evaluation and the Office for Disability, Aging, and Long-Term Care Planning provides a comprehensive dementia care framework synthesized from existing clinical guidelines and practice recommendations.11 As shown in Table 2, this framework included 14 major components ranging from initial dementia detection and diagnosis to therapies to care transition; 10 components relate to care interventions that are likely within scope.

Table 2. Dementia care framework components

Dementia Framework Components

Explanation of Components

Match to Review Scope

1. Detection of Possible Dementia

Examine for cognitive impairment when there is a decline from previous function in daily activities, occupational ability, or social engagement.

Not in scope; not care intervention

2. Diagnosis

Obtain a comprehensive evaluation and diagnosis from a qualified provider when cognitive impairment is suspected.

Not in scope; not care intervention

3. Assessment and Ongoing Reassessment

Assess cognitive status, functional abilities, behavioral and psychological symptoms of dementia, medical status, living environment, and safety. Reassess regularly and when there is a significant change in condition.

Not in scope, not care intervention and cannot be delivered by front-line caregiver/ focus on professional degreed staff.

4. Care Planning

Design a care plan that will meet care goals, satisfy the person's needs, and maximize independence.

In scope, part of care delivery

5. Medical Management

Deliver timely, individualized medical care to the person with dementia, including prescribing medication and managing comorbid medical conditions in the context of the person's dementia.

Not in scope; drug intervention

6. Information, Education, and Informed and Supported Decision Making

Provide information and education about dementia to support informed decision making including end-of-life decisions.

In scope, PWD and informal caregivers

7. Acknowledgement and Emotional Support for the Person with Dementia

Acknowledge and support the person with dementia. Allow the person's values and preferences to guide all aspects of the care. Balance family involvement with individual autonomy and choice.

In scope, nondrug PWD care interventions

8. Assistance for the Person with Dementia with Daily Functioning and Activities

Ensure that persons with dementia have sufficient assistance to perform essential health-related and personal care activities and to participate in activities that reflect their preferences and remaining strengths; help to maintain cognitive, physical, and social functioning for as long as possible; and support quality of life. Provide help as needed with medication management and pain control.

In scope, nondrug PWD care interventions

9. Involvement, Emotional Support, and Assistance for Family Caregiver(s)

Involve caregiver in evaluation, decision making, and care planning and encourage regular contact with providers. Provide culturally sensitive emotional support and assistance for the family caregiver(s).

In scope, interventions for informal caregivers

10. Prevention and Mitigation of Behavioral and Psychological Symptoms of Dementia

Identify the causes of behavioral and psychological symptoms, and use nonpharmacological approaches first to address those causes. Avoid use of antipsychotics and other medications unless the symptoms are severe, create safety risks for the person or others, and have not responded to other approaches. Avoid physical restraints except in emergencies.

In scope, nondrug treatment interventions, possibly support for formal caregivers

11. Safety for the Person with Dementia

Ensure safety for the person with dementia. Counsel the person and family as appropriate about risks associated with wandering, driving, and emergency preparedness. Monitor for evidence of abuse and neglect.

In scope, interventions may target PWD and informal and formal caregivers

12. Therapeutic Environment, Including Modifications to the Physical and Social Environment of the Person with Dementia

Create a comfortable environment, including physical and social aspects that feel familiar and predictable to the person with dementia and support functioning, a sustained sense of self, mobility, independence, and quality of life.

In scope, nondrug interventions may target PWD and informal and formal caregivers

13. Care Transitions

Ensure appropriate and effective transitions across providers and care settings.

In scope, part of care delivery

14. Referral and Coordination of Care and Services…Collaboration Among Agencies and Providers

Facilitate connections of persons with dementia and their family caregivers to individualized, culturally and linguistically appropriate care and services, including medical, other health-related, residential, and home and community-based services. When more than 1 agency or provider is caring for a person with dementia, collaborate among the various agencies and providers to plan and deliver coordinated care.

In scope, part of care delivery

Abbreviations: PWD = people with dementia

 

Interventions to improve the way care is delivered are also within the scope of this review, and many such interventions are complex multicomponent approaches for multiple dementia framework components.

Meanwhile, the manner in which systematic reviews organize and group interventions affects how informative the resulting evidence syntheses will be. To effectively structure our review, we will need to use other approaches beyond the dementia care framework. The Template for Intervention Description and Replication (TIDieR),12 the Standards for Quality Improvement Reporting Excellence (SQUIRE),13 or the Quality Improvement Minimum Quality Criteria Set (QI-MQCS)14 may improve structured reporting of complex interventions and can be leveraged to inform systematic review methodology and intervention classifications. But even with (or at times because of) structured reporting, interventions can be classified in several ways. Treatment content, mechanisms of action, and care delivery methods and modes may all contribute to different classification sets of interventions. This lack of crisp differentiation leads to sets—sometimes called "fuzzy sets," a term that refers to how interventions can fit into several different classes. Not surprisingly, interventions are often grouped inconsistently into classes of care interventions.9  

Care interventions can also be characterized by the stage of intervention development. The NIA stage model for behavioral interventions may be a useful way to help determine the intervention's readiness for broader implementation (see Table 3).15 We will need to asses which, if any, studies in stages 0 and 1 are relevant to the review scope. However, stages 2 through 4 align directly with traditional systematic review questions of efficacy, effectiveness, and comparative effectiveness. Stage 5 research, if available, directly relates to the goal of better understanding broad dissemination and implementation strategies.

Table 3. Stage model for behavioral intervention development

Stages

Stage Description

Stage 0

Basic science prior to intervention development; research on mechanisms of change

Stage 1

Intervention generation, refinement, modification, and adaptation and pilot testing

Stage 2

Traditional efficacy testing in research settings, with research-based providers

Stage 3

Efficacy testing of empirically supported interventions in community settings with community-based providers or caregivers

Stage 4

Effectiveness research maximizing external validity/applicability of results

Stage 5

Dissemination and implementation research

Adapted from NIA website.15

Finally, discussion is ongoing regarding the evidence and data elements most important for health organizations seeking to learn and make progress through innovation and quality improvement. Criteria (see Table 4) were recently developed to assess which care interventions are ready for pragmatic trials to test interventions in "real-world" health care delivery systems and payment models.16 These criteria could be modified to support valuable syntheses of implementation and dissemination studies.  

Table 4. Criteria to assess care intervention readiness for pragmatic trials

Criterion

Rational

Intervention protocol

The intervention must have a well-articulated protocol in order to be replicated.

Evidence

There must be some evidence demonstrating the efficacy that the intervention and/or its components improves the clinical outcomes of interest.

Risk

The intervention should be low risk. Adverse events and unintended consequences need to be carefully considered in this vulnerable population.

Feasibility

It should be possible to implement the intervention under real-world conditions within health care systems.

Measurement

The intervention's impact should be measurable using existing data or with minimal burden by health care partners.

Cost

An intervention should be cost-neutral or cost-effective for health care partners and/or incentivized by insurers.

Acceptability

Health care partners should believe that the potential impact of the intervention is important and that it can be adopted.

Alignment

The intervention should address priorities for health care partners and other stakeholders.

Impact

The intervention's outcomes should inform clinical decision making and policy.

From Baier, 2018.16

 

To prepare for our review, we conducted a brief evidence map of care interventions. We screened titles and abstracts of 5781 articles identified from Medline, Cochrane, EMBASE, and PsychINFO on April 18, 2018. We used the MESH term "dementia," which captures multiple dementia etiologies including Alzheimer's, Lewy Body, frontotemporal, and vascular dementias, and applied filters for controlled trials. We identified more than 900 publications for full text review. Based on a preliminary look at the care delivery and change interventions, we found approximately 36 percent were targeting PWD caregivers, 57 percent targeting PWD, and 7 percent targeting the dyad of PWD and their caregivers. About 15 to 20 percent (or a non-representative sample) were conducted in international settings. A majority of studies used duration or followup of 8 weeks to 12 months.

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