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Advisory Council April 2018 Meeting Presentation: Defining Quality Dementia Care

Friday, April 27, 2018

Printer Friendly Version in PDF Format (17 PDF pages)

 

DEFINING QUALITY DEMENTIA CARE

Alzheimer's Association

DefiningQuality Care: Dementia Care Practice Recommendations

 

Quality Care:History

  • Guidelines for Dignity
  • Key Elements of Dementia Care
  • Dementia Care Practice Recommendations

DCPR Review and Development

  • Reviewed feedback on DCPR format and structure
  • Drafted model for revision
  • Conducted focus group with care experts
  • Conducted thematic analysis of existing dementia care guidelines
  • Revised format/model and shared with care experts for review and feedback
  • Worked with expert researchers/authors to develop topic area articles with recommendations

Researchers/Authors

  • Person Centered Care Focus
    • Fazio, Pace, Flinner & Kallmyer
  • Detection and Diagnosis
    • Maslow & Fortinsky
  • Assessment and Care Planning
    • Moloney, Kolanowski, Van Haitsma & Rooney
  • Medical Management
    • Austrom, Boustani & LaMantia
  • Information, Education & Support
    • Whitlach & Orsulic-Jeras
  • Ongoing Care: ADLs
    • Prizer & Zimmerman
  • Ongoing Care: BPSD
    • Scales, Zimmerman & Miller
  • Staffing
    • Gilster, Boltz & Dalessandro
  • Therapeutic Environment and Safety
    • Calkins
  • Transitions/Coordination of Services
    • Hirschman & Hodgson

Quality Care: Today

  • Evidence-based practices
  • 56 recommendations by 27 expert authors
  • Applicable to various care settings and throughout the disease continuum
  • Published as a supplement to Feb 2018 issue of The Gerontologist
  • Foundation for quality person-centered care

Dementia Care Practice Recommendations

The Dementia Care Practice Recommendations are grounded in the fundamentals of person-centered care. They illustrate the goals of quality dementia care in the following areas: Detection and diagnosis; Assessment and care planning; Medical management; Information, education and support; Ongoing care for behavioral and psychological symptoms of dementia, and support for activities of daily living; Workforce; Supportive and therapeutic environments; Transitions and coordination of services.

PERSON CENTERED FOCUS

  • Recommendations:
    • Know the person
    • Person's reality
    • Meaningful engagement
    • Authentic, caring relationship
    • Supportive community
    • Evaluation of care practices

Effects of Person-Centered Care

Individuals Li and Porock (2014) 24 studies--15 culture change and 9 person-lefted practices Beneficial effects on psychological wellbeing. Significant effects on decreasing behavioral symptoms and psychotropic medication use
Staff Barbosa, Sousa, Nolan, & Figueiredo (2015) 7 studies--PCC approaches, including DCM; stimulation-oriented approaches, emotion-oriented approaches; and behavioral-oriented approaches. Reduction in stress, burnout and job dissatisfaction
Individuals and staff Brownie and Nancarrow (2013) 9 articles--multi-component person-lefted interventions Positive influences on staff satisfaction and capacity to provide care; lower rates of boredom and feelings of helplessness and reduced levels of agitation in residents

DETECTION AND DIAGNOSIS

  • Recommendations
    • Information about brain health and cognitive aging
    • Signs and symptoms of cognitive impairment
    • Concerns, observation and changes
    • Routine procedures for assessment and referral
    • Brief mental status test when appropriate
    • Diagnostic evaluation follow-through
    • Better understanding of diagnosis

ASSESSMENT AND CARE PLANNING

  • Recommendations
    • Regular, comprehensive, person-centered assessments and timely interim assessments
    • Information gathering, relationship building, education and support
    • Collaborative, team approach
    • Accessible documentation and communication systems
    • Advance planning

Comprehensive PCC Assessment

  • Experience of the person/care partner
  • Function and Behavior
  • Health Status and Risk Reduction

MEDICAL MANAGEMENT

  • Recommendations
    • Holistic, person-centered approach
    • Role of medical providers
    • Common comorbidities of aging
    • Non-pharmacologic interventions
    • Pharmacological interventions when necessary
    • Person-centered plan for possible medical and social crises
    • End-of-life care discussions

INFORMATION, EDUCATION AND SUPPORT

  • Recommendations
    • Preparation for the future
    • Work together and plan together
    • Culturally sensitive programs
    • Education, information and support during transition
    • Technology to reach more families

Early Stage: Becoming Familiar

  • Education and Information
    • Disease
    • Symptoms
    • Treatment
    • Prognosis
  • Support
    • Support groups
    • Technology-based
    • Care planning for future
    • Driving

Middle Stage: Increased Care and Support Needs

  • Education and Information
    • Family-centered
    • Behaviors
    • IADLs and PADLs
  • Support
    • Support groups
    • Counseling
    • Care coordination
    • Technology-based

Late Stage: Relocation and End of Life Care

  • Education and Information
    • Care needs
    • Continue in-home care or relocate to an alternate care setting
  • Support
    • Support groups or counseling
    • End of life and hospice care
    • Palliative care approach

ONGOING CARE: ADLs

  • Recommendations
    • Support for ADL function
    • Person-centered care practices
    • Dressing -- dignity, respect, choice; process; environment
    • Toileting -- also health and biological considerations
    • Eating -- also adaptations and functioning; food, beverage and appetite

Themes in Evidence to Provide Support for ADLs

Dressing Toileting Eating and Nutrition
Dignity/respect/choice Dignity/respect/choice Dignity/respect/choice
Dressing process Toileting process Dining process
Dressing environment Toileting environment Dining environment
  Health/biological considerations Health/biological considerations
    Adaptation/functioning
    Food/beverage/appetite

ONGOING CARE: BPSD

  • Recommendations
    • Social and physical environmental triggers
    • Non-pharmacological practices
    • Investment for implementation
    • Protocols
    • Evaluation of effectiveness

Sensory Practices

Practice Evidence Outcomes
Aromatherapy Moderate Positive effect on agitation
Massage Small Positive effects on agitation, aggression, anxiety, depression, disruptive vocalizations
Multi-sensory stimulation Large Positive effects on agitation, anxiety, apathy, depression
Bright light therapy Moderate Mixed effects

Psychosocial Practices

Practice Evidence Outcomes
Validation therapy Small Positive effects on agitation, apathy, irritability, night-time disturbance
Reminiscence therapy Moderate Positive effects on mood, depressive symptoms
Music therapy Moderate Positive effects on a range of BPSDs, including anxiety, agitation, and apathy, particularly with personalized music practices
Pet therapy Small Preliminary positive effects on agitation, apathy, disruptive behavior
Meaningful activities Moderate Mixed--some positive effects on agitation; larger effect sizes for activities that are individually tailored

Structured Care Protocols

Practice Evidence Outcomes
Mouth Care Small Preliminary: positive effects on care-resistant behaviors
Bathing Small Positive effects on agitation

WORKFORCE

  • Recommendations
    • Orientation and training, and ongoing training
    • Person-centered information systems
    • Teamwork and interdepartmental/interdisciplinary collaboration
    • Caring and supportive leadership team
    • Relationships
    • Continuous improvement

Long-Term Care Workforce Principles

  • Staffing levels should be adequate to allow for proper care at all times--day and night.
  • Staff should be sufficiently trained in all aspects of care, including dementia care.
  • Staff should be adequately compensated for their valuable work.
  • Staff should work in a supportive atmosphere that appreciates their contributions to overall quality care. Improved working environments will result in reduced turnover in all care settings.
  • Staff should have the opportunity for career growth.
  • Staff should work with families in both residential care settings and home health agencies.

SUPPORTIVE AND THERAPEUTIC ENVIRONMENT

  • Recommendations
    • Sense of community
    • Comfort and dignity
    • Courtesy, concern and safety
    • Opportunities for choice
    • Meaningful engagement

TRANSITION AND COORDINATION OF SERVICES

  • Recommendations
    • Education about common transitions in care
    • Timely communication of information between, across and within settings
    • Preferences and goals of the person living with dementia
    • Strong inter-professional collaborative team to assist with transitions
    • Evidence-based models

Common Transitions

Common transitions for people with dementia between Hospital, Post Acute Care Services, Home, Long-term Care, and Hospice/Palliative Care.

Psychosocial/Psychoeducational Interventions

Author Setting Intervention Description Outcomes
Mittelman et al. (2006) Home New York University (NYU) Model Enhanced counseling and support intervention versus usual care Time to was over 1.5 years longer than usual care group
Brodaty et al. (1997) Psych hospital Dementia Caregiver Training (DCT) Program 10 day intensive psycho-educational program for caregivers. Time to placement was statistically significantly delayed
Hanson et al. (2017 Nursing home Goals of Care (GOC) Intervention OC video with structured care planning discussion versus informational video and standard care planning Residents had half as many hospitalizations; Family members rated their overall quality of communication with staff higher at three months, and the quality of end-of-life care communication with staff higher at 9 months

Care Coordination Interventions

Author Setting Intervention Description Outcomes
Naylor et al. (2014) Hospital to home Transitional Care Model (TCM) Augmented Standard Care versus Resource Nurse Care versus TCM Time to first rehospitalization was longest for those in the TCM, and rehospitalization or death was accelerated for both other groups
Samus et al. (2014) Home MIND at Home Dementia care coordination versus usual care Significant delay in time to transition from home and remained in home 51 days longer
Bass et al. (2014) Home Partners in Dementia Care (PDC) Care coordination program versus usual care Fewer hospitalizations and fewer emergency department visits
Bellantonio et al. (2008) Assisted living Geriatrics Team Intervention (GTI) Four systematic inter professional geriatric team assessments Reductions in the risk of unanticipated transitions, including hospitalizations, ED visits and nursing home placement, as well as death

Dementia Care Practice Recommendations

The Dementia Care Practice Recommendations are grounded in the fundamentals of person-centered care. They illustrate the goals of quality dementia care in the following areas: Detection and diagnosis; Assessment and care planning; Medical management; Information, education and support; Ongoing care for behavioral and psychological symptoms of dementia, and support for activities of daily living; Workforce; Supportive and therapeutic environments; Transitions and coordination of services.

Quality Care in Long-Term & Community-Based Care

  • Dementia Care Practice Recommendations
  • Influencers
    • Federal and State Policies
    • National Provider Member Organization Partnerships
    • Accreditation Bodies
  • Programs
    • Organization-Wide Consultative Coaching
    • Curriculum Review
    • essentiALZ® Certification
    • Project ECHO
    • Dementia Care Provider Roundtable
    • Dementia Care In-Person Training
  • Impact
    • Number of Covered Lives
    • Number of Organizations
    • Outcomes Research

Questions?

Alzheimer's Association

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April 27, 2018 -- Advisory Council Meeting #28

The meeting was held on Friday, April 27, 2018, in Washington, DC. During the meeting, the Clinical Care Subcommittee took charge of the theme, focusing on advancing consensus on dementia care elements to guide new outcomes measurement. The Council heard speakers in two sessions, one focused on developing consensus about dementia care elements, and the second on models that are informing outcomes measurement. The meeting also included updates on work from the previous meetings, a presentation on the final report from the October 2017 Care Summit, and federal workgroup updates. Material available from this meeting is listed below or at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Apr2018.

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.

 

General Information

 

Handouts

  • Main Summit Recommendations -- [HTML Version] [PDF Version]

  • National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Services -- [HTML Version] [PDF Version]

 

Presentation Slides

 

Videos

  • Introductions and Updates -- [Video]

  • Clinical Care Agenda Session 1 -- [Video]

  • Public Comments -- [Video]

  • Clinical Care Agenda Session 2 -- [Video]

  • Care Summit Final Report -- [Video]

  • MEETING WRAP-UP: Final Report to the NAPA Advisory Council -- [Video]