Examining Models of Dementia Care: Final Report. APPENDIX C. SAMPLE DEMENTIA CARE PROGRAM SITE VISIT DISCUSSION GUIDE

09/01/2016

Introduction (Read this for all interviews):

Thank you for making time to meet with us today. My name is xxx, and I am joined by xxx. We work at RTI International, a large nonprofit research institute. We'd like to discuss some questions related to your xxx program.

This site visit is part of a project funded through ASPE at U.S. Department of Health and Human Services. The project will help inform recommendations to improve services for people with Alzheimer's disease and their caregivers. Our goal is to better understand how dementia care programs operate. We also want to get your thoughts on parts of the program that you and your team find easiest and most challenging to implement.

We would like your candid views about xxx program. We want to assure you that your participation is voluntary, that you will not be identified by name in the report, and the discussion notes will be kept confidential. To ensure that our notes are accurate and complete, we would also like to record our conversation. Is it OK with you if we record the conversation?

Do you have any questions before we begin?

Let's begin by talking about the dementia care program operating at this site.

  1. Please provide an overview of the xxx program.
  2. What is the referral source of program participants?
  3. How many people are served (per day/per month/per year)?
  4. What services are provided? For how long?
  5. Who provides the services?
  6. What are the major sources of financing?
  7. Does the program have unique features in serving people with Alzheimer's disease and their caregivers?

     

Next we want to discuss in detail how various parts of the program operate.

  1. SCREENING/DETECTION OF POSSIBLE DEMENTIA: EXAMINE FOR COGNITIVE IMPAIRMENT WHEN THERE IS A DECLINE FROM PREVIOUS FUNCTION IN DAILY ACTIVITIES, OCCUPATIONAL ABILITY, OR SOCIAL ENGAGEMENT.

    1. Our understanding is that your program doesn't explicitly conduct screening/detection of possible dementia. Is this correct?

    2. If yes, we want to understand what your program does when a participant presents with a need for screening/detection of possible dementia.

      If no, discuss questions 3 through 7.

    3. How does the program address screening/detection for possible dementia?

    4. Does your program have protocols for screening/detection of possible dementia? Please describe.

    5. Who is involved in conducting screening?

    6. What parts of conducting screening have been the most successful?

    7. What parts of conducting screenings have been the most challenging for your program to achieve?

  2. DIAGNOSIS: OBTAIN A COMPREHENSIVE EVALUATION AND DIAGNOSIS FROM A QUALIFIED PROVIDER WHEN COGNITIVE IMPAIRMENT IS SUSPECTED.

    1. Our understanding is that your program doesn't explicitly provide a comprehensive evaluation and diagnosis from a qualified provider. Is this correct?

    2. If yes, we want to understand what your program does when a participant does not have a formal diagnosis.

      If no, discuss questions 3 through 7.

    3. If an individual is identified as having a suspected cognitive impairment, does your program provide a comprehensive evaluation and diagnosis from a qualified provider or does your program refer the individual to a qualified provider?

    4. Does the program have a standard protocol for doing so? Please describe.

    5. Who is involved in diagnosing dementia?

    6. What parts of ensuring professional diagnoses have been the most successful?

    7. What parts of ensuring professional diagnoses have been the most challenging for your program to achieve?

  3. ASSESSMENT AND ONGOING REASSESSMENT: ASSESS COGNITIVE STATUS, FUNCTIONAL ABILITIES, BEHAVIORAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA, COMFORT, MEDICAL STATUS, MEDICATIONS, LIVING ENVIRONMENT, AND SAFETY, INCLUDING DRIVING AND VULNERABILITY TO FRAUD AND ABUSE. REASSESS REGULARLY AND WHEN THERE IS A SIGNIFICANT CHANGE IN CONDITION, CARE PROVIDER OR ROUTINE.

    1. Does your program formally assess cognitive status, functional abilities, behavioral and psychological symptoms of dementia, medical status, living environment, or safety? What areas does the program formally assess? Are there other areas that are assessed but not formally? If so, describe that process.

    2. Does the program have protocols to do so? Please describe.

    3. Who is involved in assessment and ongoing reassessment?

    4. What parts of conducting the assessment have been the most successful?

    5. What parts of conducting the assessment have the most challenging for your program to achieve?

  4. CARE PLANNING: DESIGN A CARE PLAN THAT MEETS CARE GOALS, SATISFIES THE PERSON'S NEEDS, AND MAXIMIZES INDEPENDENCE AND SAFETY.

    1. Please tell us about your program's process of developing care plans.

    2. Does the program have formal protocols for doing so? Please describe.

    3. Who is involved in care planning?

    4. What parts of designing care plans have been the most successful?

    5. What parts of designing care plans have been the most challenging for your program to achieve?

  5. MEDICAL MANAGEMENT: DELIVER TIMELY, INDIVIDUALIZED MEDICAL CARE TO THE PERSON WITH DEMENTIA INCLUDING MEDICATION MANAGEMENT AND MANAGEMENT OF COMORBID MEDICAL CONDITIONS IN THE CONTEXT OF THE PERSON'S DEMENTIA. REFER TO PROVIDERS OF OTHER MEDICAL, HEALTH-RELATED, RESIDENTIAL AND COMMUNITY CARE SERVICES, AS NEEDED.

    1. Our understanding is that your program doesn't explicitly provide medical care and medical management to the person with dementia. Is this correct?

    2. We want to understand what your program does when a participant presents with issues related to medical management.

      If no, discuss questions 3 through 6.

    3. Does your program provide medical care and medical management to the person with dementia? Please discuss some of the keys aspects of medical management at your site.

      • Does the program have standard protocols on medical care for people with dementia and their caregivers?
      • How are referrals to other providers handled?
      • If the program does not provide medical care directly, how are medical issues addressed?

         

    4. Who is involved in medical management?

    5. What aspects of medical management have been the most successful?

    6. What aspects of medical management have been the most challenging for your program to achieve?

  6. INFORMATION, EDUCATION, AND INFORMED AND SUPPORTED DECISION MAKING: PROVIDE INFORMATION AND EDUCATION ABOUT DEMENTIA TO SUPPORT INFORMED DECISION MAKING INCLUDING TREATMENT OPTIONS, ADVANCE CARE PLANNING AND END-OF-LIFE DECISIONS.

    1. Does your program provide consumer information and education about dementia to people with Alzheimer's disease and their caregivers?

    2. Are there standard protocols to do so?

    3. Who is involved in providing information and education?

    4. Which parts of providing information and education have been the most successful?

    5. Which parts of providing information and education have been the most challenging for your program to achieve?

  7. INCLUSION OF CAREGIVERS: INVOLVE CAREGIVER IN EVALUATION, DECISION MAKING, AND CARE PLANNING AND ENCOURAGE REGULAR CONTACT WITH PROVIDERS.

    1. Please describe how your program involves caregivers in evaluation, decision making, and care planning.

    2. Are there standard protocols for doing so?

    3. Who is involved in making the arrangements to include caregivers?

    4. What aspects of including caregivers have been the most successful?

    5. What aspects of including caregivers have been the most challenging for your program to achieve?

  8. ACKNOWLEDGEMENT AND EMOTIONAL SUPPORT FOR THE PERSON WITH DEMENTIA: ACKNOWLEDGE AND SUPPORT THE PERSON WITH DEMENTIA.

    1. Does your program have processes in place to acknowledge and support the person with dementia?

    2. Are there standard protocols to do so? Please describe.

    3. Who is involved in the process of acknowledgement and support for the person with dementia?

    4. What aspects of acknowledgement and support have been the most successful?

    5. What aspects of acknowledgement and support have been the most challenging for your program to achieve?

  9. 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.

    1. Does your program counsel families on providing assistance with health-related and personal care activities and help the person participate in activities to the person with dementia?

    2. Are there protocols for doing so? Please describe.

    3. Who is involved in counseling families on providing assistance providing assistance?

    4. What parts of counseling families on providing assistance have been the most successful?

    5. What parts of counseling families on providing assistance have been the most challenging for your program to achieve?

  10. EMOTIONAL SUPPORT AND ASSISTANCE FOR THE FAMILY CAREGIVER(S): PROVIDE CULTURALLY SENSITIVE EMOTIONAL SUPPORT AND ASSISTANCE FOR THE FAMILY CAREGIVER(S).

    1. Does your program provide emotional support and assistance for the family caregiver(s)? Does the program have protocols for doing so? Please describe.

    2. Who is involved in providing support and assistance?

    3. What parts of providing support and assistance have been the most successful?

    4. What parts of providing support and assistance have been the most challenging for your program to achieve?

  11. MANAGEMENT OF BEHAVIORAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA: IDENTIFY THE CAUSES OF OR TRIGGERS FOR 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.

    1. How does the program address behavioral and psychological symptoms of dementia, such as aggressive behavior and wandering? Does your program have protocols in place for counseling family caregivers about managing these symptoms of dementia? Please describe.

    2. Does the program counsel families on the use of prescription drugs to manage behavioral symptoms? Does the program counsel families on the use antipsychotic medications? If so, under what circumstances? What guidance is provided to families for using these medications?

    3. Does the program counsel families on the use of physical restraints? If so, what kind of guidance is provided?

    4. Who is involved in counseling families about the management of behavioral and psychological symptoms?

    5. What aspects of counseling families about management of behavioral and psychological symptoms been the most successful?

    6. What aspects of counseling families about management of behavioral and psychological symptoms been the most challenging for your program to achieve?

  12. SAFETY FOR THE PERSON WITH DEMENTIA: ENSURE A SAFE ENVIRONMENT FOR THE PERSON WITH DEMENTIA.

    1. How does the program counsel families about ensuring a safe environment for the person with dementia and their caregivers at home? Does your program have protocols for counseling families on safety for the person with dementia? Please describe.

    2. Who is involved in counseling families about ensuring a safe environment?

    3. What aspects of counseling families about ensuring safety have been the most successful?

    4. What aspects of counseling families about ensuring safety have been the most challenging for your program to achieve?

  13. 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, QUALITY OF LIFE, AND SAFETY.

    1. What steps does your program take to counsel families about creating a therapeutic and comfortable environment for the person with dementia at home, including both social and physical aspects? Please describe.

    2. Who is involved in counseling families about creating a therapeutic environment?

    3. What parts of counseling families about creating a therapeutic environment have been the most successful?

    4. What parts of counseling families about creating a therapeutic environment have been the most challenging for your program to achieve?

  14. CARE TRANSITIONS: ENSURE APPROPRIATE AND EFFECTIVE TRANSITIONS ACROSS PROVIDERS AND CARE SETTINGS.

    1. Does your program have protocols to ensure appropriate and effective transitions across providers and care settings?

    2. If not, can you describe what your program does when a participant presents a need for support for care transitions?

      If yes, discuss questions 3 through 6.

    3. From time to time persons with dementia have to transition to other providers and care settings. What does the program do to ease those transitions? Does your program have protocols to ensure appropriate and effective transitions across providers and care settings? Please describe.

    4. Who is involved in organizing care transitions?

    5. What parts of ensuring appropriate and effective care transition have been the most successful?

    6. What parts of ensuring appropriate and effective care transition have been the most challenging for your program to achieve?

  15. COLLABORATION AMONG AGENCIES AND PROVIDERS: 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.

    1. Does the program work with other agencies and providers to plan and coordinate the care for individuals with dementia and their caregivers?

    2. Does your program have protocols for collaboration among the various agencies and providers? Please describe.

    3. Who is involved in organizing collaboration among agencies and providers?

    4. What parts of collaboration among agencies have been the most successful?

    5. What parts of collaboration among agencies have been the most challenging for your program to achieve?

  16. REFERRAL AND COORDINATION OF CARE AND SERVICES THAT MATCH THE NEEDS OF THE PERSON WITH DEMENTIA AND FAMILY CAREGIVER (S): 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.

    1. When a person with dementia and their caregiver needs services not provided by your program, how is referral to other providers handled?

    2. Does your program have protocols in place to facilitate referral and coordination of care and services that match the needs of the person with dementia and family caregivers? Please describe.

    3. How does the program take cultural and linguistic needs into account in their referrals?

    4. Who is involved in facilitating referrals and coordination of care?

    5. What parts of facilitating referrals and coordination of care have been the most successful?

    6. What parts of facilitating referrals and coordination of care have been the most challenging for your program to achieve?

Finally, are there any other important parts of dementia care program that we have not discussed?

Do you have any other ideas about what is important for dementia care programs to do?