The NYU Caregiver Intervention Update on Current Implementations

The NYU Caregiver Intervention: Update on Current Implementations Mary Mittelman, Dr. PH Center of Excellence on Brain Aging NYU Langone Medical Center

The Original NYU Caregiver Intervention n n Intervention ¨ 2 individual and 4 family counseling sessions within 4 months ¨ Support group participation as long as needed ¨ Ad hoc counseling as long as needed Assessments every 4 months for 1 year and every 6 months thereafter, whether person with dementia (pwd) at home or in nursing home and every year for 2 years after death of pwd. Randomized to treatment vs usual care 406 spouse caregivers ¨ Followed up to 18 years ¨ Less than 5% dropout while pwd at home

The Original NYU Caregiver Intervention n n n n Improved support for spouse caregiver at 4 months Improved reaction to problem behaviors at 4 months continued more than 4 years Reduced symptoms of depression at 4 months continued more than 3 years Improved self-rated physical health and fewer illnesses more than 1 year Delayed nursing home placement 1. 5 years Mediator is social support Reduced symptoms of depression and burden of caregiver when pwd placed in nursing home Reduced symptoms of depression of caregiver when pwd died.

Current Enrollment in NYUCI Implementation Studies Demonstration Projects Years 3 2 2 1 1 1 2 2 Place Ao. A Minnesota Ao. A California Ao. A Georgia Ao. A Florida Ao. A Utah Ao. A Wisconsin VA Bedford MA VA Manhattan NY Total Screened 206 129 195 74 65 85 53 26 833 Enrolled 186 68 96 67 42 50 17 4 530 Dropped 37 9 36 6 2 9 5 1 105 Complete* 96 29 30 20 11 17 Screened 136 25 161 Enrolled 78 18 96 Dropped 2 2 4 Complete* 27 0 27 203 New RCTs Years 2 0. 25 Place Washington Heights Israel Total * Complete means at least one follow-up assessment completed

Challenges in Implementing NYUCI in Community Settings Cultural values n ¨ Drug treatment for illness ¨ Treat only the patient, not the family. Physicians n ¨ ¨ Patients and families n ¨ ¨ ¨ n Reluctance to diagnose dementia Unaware of value of counseling and support for caregivers. Unaware of reasons to seek evaluation of memory problems Unaware of available services and value of caregiver interventions Overburdened, physically ill. Lack of clinically trained professionals to provide counseling interventions.

Challenges in Implementing NYUCI in the Community n Who should be offered the intervention? Should we use the same eligibility criteria as the research study? ¨ Should intervention be offered to all or only to those at high risk? ¨ What is the value of the assessment? n Without randomized controlled trials, how can we assess value of intervention? n

Challenges to Implementation Recruitment challenges n Retention challenges n Sustainability challenges n

Modifications in Community Settings n n In cultures where recruitment of spouses difficult because of low marriage rates and parent lives with adult child, include adult child as primary caregiver. In areas where older adults not available in winter, or families live far apart, assessments conducted every 6 months in first year In areas where family members live far apart, some participate by phone Assessment now somewhat shorter.

Challenges for Researchers Priorities of researchers aren’t the same as those of agency directors or staff n How to assure that the intervention remains true to its original design while adapting to the realities of each community setting. n

Staff Training Challenges It was difficult for us to explain all the components of the intervention and the reasons for each n Staff without clinical experience had difficulty implementing the intervention n Ongoing regular clinical staff meetings are hard to schedule n Staff changes make it necessary to train additional staff. n

Counselors’ Comments n n While facing the heartbreak of dementia, we can help the family and friends stay focused as we gently guide and support them through uncharted territory to becoming a caregiving unit with new roles and norms. It is amazing to watch this process! (Wisconsin) All staff involved in the NYUCI would want to continue past the funding period due to the immediate positive outcomes they have experienced with these caregivers and their families (Florida).

Next Steps Web-based training in the NYUCI, including certification of staff and licensing of agencies n Translating training into other languages and cultures n Web-enabled counseling at a distance. n