1. Building Dementia Capability Into the Long- Term Services and Supports System Jane Tilly, DrPH, Administration on Aging Josh Wiener, PhD, RTI International Elizabeth Gould, MSW, Alzheimer’s Association 1

2. What is Dementia Capability at the Systems Level? Ability to identify people with dementia and their caregivers Information, referral, and service coordination systems provide person-centered services to people with dementia and their caregivers Eligibility criteria for public programs that are equitable for people with dementia 2

3. What is Dementia Capability at the Systems Level? (cont.) Coverage of services that people with dementia and their caregiver are likely to use LTSS workforce that knows about Alzheimer’s disease and other dementias and how to serve that population and their caregivers Quality assurance systems that take into account the unique needs of people with dementia and their caregivers 3

4. Why is Dementia Capability Necessary? People with dementia have additional needs for support compared to people without cognitive impairment Creating a separate system for people with dementia is not possible or desirable, but the general system needs to be able to meet their needs like it does for others with disabilities 4

5. Why Dementia Capability: Symptoms of Alzheimer’s Disease Decreasing capabilities: Short-term memory Judgment Behavioral symptoms Ability to plan and carry out activities Vision Gait and mobility Ability to speak coherently and understand spoken and written words 5

6. Why Dementia Capability: Progression of Alzheimer’s Disease Beginning—ability to manage daily life decreases (financial management, planning, driving) Moderate—ability to complete daily activities compromised; behavioral symptoms, need for supervision Advanced—need assistance, including supervision, with activities of daily living Final stages—loss of communication, total dependence on others Increasing strain on family caregivers 6

7. Why Dementia Capability: Substantial Portion of People With Disabilities Using the 2002 Health and Retirement Study, 15 percent of frail older adults living in the community had a cognitive impairment 27 percent of persons with very severe disabilities (3+ ADLs) aged 65+ in the community had a cognitive impairment (Johnson and Wiener, 2007) 7

8. Why Dementia Capability: Strain on Family Caregivers Unpaid caregivers of people with ADRD are more likely than other caregivers to assist with ADLs Assisting person to get out of bed (54% compared to 42%) Help with getting to and from the toilet (32% compared to 26%) Help with eating (31% compared to 14%) (National Alliance for Caregiving/AARP Survey, 2009) 8

9. Provision of Person-Centered Services Like others, people with dementia and their family caregivers need information about services, programs, and financing so they can make informed choices and manage their services Family caregivers are likely to have a major role in decision-making and management Local access agencies, such as AAAs and ADRCs, are key to providing information and entry to LTSS 9

10. Provision of Person-Centered Services: Identifying Persons With Dementia Problems Impossible to provide good person-centered care unless you know the people with dementia and their caregivers. If person with dementia rather than caregiver is seeking information, may affect their ability to use information. Solutions Add dementia-specific questions to intake and assessments protocols and online self-assessment forms. 10

11. Provision of Person-Centered Services: Identifying Persons With Dementia (cont.) Solutions Train telephone operators and other staff at AAAs, ADRCs, and other local agencies to recognize possible cognitive impairment Establish policies and procedures for referral of persons with possible cognitive impairment for professional assessment Be sensitive to different cultural traditions about dementia Partner effectively: WI and MA Alzheimer’s Association staff provide training for ADRC staff 11

12. Provision of Person-Centered Services: Additional Issues Local access agencies (e.g., AAAs, ADRCs) capability to provide general information about dementia and refer to more specialized organizations Refer to organizations and providers with dementia expertise (although all should be dementia capable) 12

13. Eligibility Criteria for Public Programs Important that functional eligibility criteria take cognitive impairment into account In Channeling demonstration, people with one ADL and cognitive impairment used more services than people with two ADLs and no cognitive impairment (Spector and Kemper, 1994) 13

14. Eligibility Criteria for Public Programs (cont.) Measures for cognitive impairment are not standardized and do not easily translate into service needs like ADLs or IADLs Level of care criteria for public programs, particularly Medicaid home and community-based services, vary greatly across states Level of care criteria do not always address the effects of dementia: Need for prompting and cueing and need for supervision to deal with behavioral symptoms and impaired judgment 14

15. Eligibility Criteria for Public Programs (cont.) Some states weight “hands-on” assistance more heavily than cueing even if caregiver time the same Six-state study of Medicaid nursing home level of care criteria found all used appropriate measures of need, but because of measurement issues, stringency of criteria, or requirement for medical/nursing needs, some people with dementia not eligible (O’Keeffe et al., 2006) Eligibility for Medicaid HCBS waivers linked to eligibility for nursing home care 15

16. Service Use: Use of Home and Community-Based Services People with dementia are heavy users of HCBS services, which needs to be taken into account in service planning 24% of persons receiving government-funded home health care have moderate to severe cognitive impairment People with ADL needs and cognitive impairment are twice as likely to receive paid home care as people without cognitive impairment (Johnson and Wiener, 2006; U.S. Department of Health and Human Services, 2004) 16

17. Service Use: Service Use Per Person is Greater Greater use of services needs to be taken into account in person-centered planning: Frail older people with cognitive impairment used 109 hours of paid home care per month compared to 48 hours for those without a cognitive impairment. In Channeling demonstration, people with one ADL and cognitive impairment used 40 hours of paid home care versus 29 hours for people without cognitive impairment. (Johnson and Wiener, 2007; Spector and Kemper, 1994) 17

18. Service Use Differs People with dementia need certain services because of behavioral symptoms and need for constant supervision, such as: Adult day health care Behavioral health assessment and intervention Respite care Alarm systems and identification programs Caregiver training and support Plus other LTSS 18

19. Service Use: Where Do Caregivers Fit In? Most programs focus on providing services to the eligible beneficiary (i.e., person with dementia) Some resistance to covering services to caregivers, such as caregiver counseling or caregiver training Caregiver training and support can be covered through Medicaid home and community-based services waivers and rehabilitation services 19

20. Service Use: People With Dementia Can Participate in Self-Directed LTSS Person chooses services, has an individual budget, and can hire, fire, schedule, and supervise worker rather than agency People with mild to moderate dementia can express preferences and can participate in self-direction, likely with the help of a family caregiver A 2007 study of 11 states found that people with cognitive impairment participated in at least one self- directed program in each state (Tilly, 2007) 20

21. Service Use: Participation in Self- Directed LTSS Representatives help make participation by people with dementia possible Representatives (usually family members) often retain some responsibility for making and implementing decisions 60% to 75% of people in self-directed programs have representatives 21

22. Training for Dementia Capability LTSS workforce receives low level of overall training (e.g., federal requirement for 75 hours for home health aides), with little focus on dementia Affordable Care Act permits HHS to require nursing homes to conduct dementia training, but does not increase the number of required hours of training States vary in what they require of state and local staff, workers, managers, and providers 22

23. Training for Dementia Capability (cont.) WA developed a comprehensive training program for service providers, which covers basics of dementia, communication, behaviors, and providing assistance with daily activities MA ADSSP project has developed new standards for provider training and qualifications, hired a dementia trainer, and provided special training for Supportive Home Care Aides (who specialize in people with dementia) High turnover in LTSS means that training needs are ongoing 23

24. Quality Assurance Establish measures of dementia capability for the LTSS system Measure the experience of persons with dementia and their family caregivers in the LTSS system Track these measures over time as a core part of quality assurance Establish continuous quality improvement 24

25. Conclusions Because people with dementia and their family caregivers are a substantial part of the population needing LTSS, the system cannot be effective if it does not address their needs Although people with dementia have needs similar to those with other disabilities, their needs do differ markedly as a result of cognitive impairment and behavioral symptoms Although some specialized services and training are necessary, the goal is a dementia-capable LTSS 25

26. Upcoming Products From Resource Center on Dementia Capability Issue brief on dementia capability Dementia capability system assessment tool Toolkit on resources for information and services for people with dementia Issue brief on dementia screening tools for use by nonmedical personnel All available by September 26

27. Contact Information Jane Tilly, DrPH Health and Dementia Team Lead Office of Planning and Policy Development Administration on Aging jane.tilly@AoA.hhs.gov 27