Alzheimer’s Disease Center Psychosocial Core
The Psychosocial Core of NYU Langone’s Alzheimer’s Disease Center is a unique resource for participants, family caregivers, and researchers. The psychosocial approach looks at individuals in the context of the combined influence that psychological factors and the surrounding social environment have on their physical and mental wellness and their ability to function.
The Psychosocial Core was first established in 1998. The mandate of the core is based on the findings of the internationally renowned study of the NYU Caregiver Intervention, funded for two decades by the National Institutes of Health (NIH), which demonstrated numerous long-term benefits for family caregivers and people with dementia. By improving caregiver wellbeing—including satisfaction with support from family and friends, reductions in caregiver depression and stress, and improved physical health—the intervention postponed residential care for people with dementia by 1.5 years, compared with those who received standard care, and saved significant healthcare costs. Through the comprehensive assessment of the Psychosocial Core, participants and caregivers receive personalized recommendations and referrals. The assessment provides potential participants and data for development of new interventions for older adults and family caregivers.
Resources for Researchers
We offer researchers access to a unique, large longitudinal database of comprehensive psychosocial assessments with as many as 13 follow-up assessments, including the following list of assessment instruments:
|Part 1: Administered to All Participants|
|Background Information||Present activities (work, volunteer, babysitting, and religious activity), caregiver status (current/past), and reason for seeking evaluation.|
|Physical Health||Three subjective 4-point ratings of current physical health from the OARS1,2|
|Depression Symptoms||Depression Inventory (BDI, α=.86)3 is a 21-item self-rating inventory.|
|Anxiety Symptoms||Beck Anxiety Inventory (BAI)4 is a 21-item self-rating scale.|
|Mastery||Mastery (α=.75)5 is a 7-item scale.|
|Coping Self-efficacy*||*Coping self-efficacy6 NIH TB (NIH Toolbox)|
|Social Support||The Stokes Social Network List (α = .92)7 list of relatives or friends, whether close; kinds of support, helpfulness, satisfaction, each on a 6-point scale.|
|Loneliness*||Loneliness Scale (NIH Toolbox)8|
|Quality of Life||EuroQOL Questionnaire Global quality of life: (α = .90)9.|
|Resilience*||*Connor-Davidson Resilience Scale (CD-RISC)*10 10 item scale used in the SAGE study|
|Meaning and Purpose in Life*||* Meaning and Purpose (NIH Toolbox)11|
|Optimism*||*Life Orientation test (LOT-R)*38 used in the SAGE study|
|Part 2: Administered to Caregivers of People with Dementia (Note: Most of the caregivers will not have provided detailed information about themselves during the Clinical Core assessment, so additional demographic information will be collected for them)|
|Family Conflict Related to Dementia Caregiving||The Family Conflicts Scales (α=.80 to .86)12 12 items: conflict around illness, care, family members’ attitudes and actions toward patient and caregiver.|
|Appraisal of Problem Behavior||Revised Memory and Behavior Problems Checklist (α = .84: behavior, .90: reaction)13 24 questions regarding frequency and reaction to problem|
|Caregiving||Developed for NYUCI: life changes, new responsibilities; activities curtailed, role conflicts, living arrangements, financial difficulties due to the patient's illness|
|Time Spent Caregiving and Use of Formal Services||Caregiver Time Expenditure14 adapted for the NYUCI; job loss, time spent by primary caregiver, other unpaid and paid caregivers in 18 activities; use of 13 formal services|
|Caregiver Appraisal||Philadelphia Geriatric Center Caregiver Appraisal Scales15 34 items, burden (α=.85), satisfaction, (α=.67), impact (α=.70), mastery and ideology|
|* Added to assessment to facilitate new psychosocial research based on a review of the literature related to successful aging (selected from the NIH toolbox, when possible, for our future research on successful aging).|
References to Instruments in Psychosocial Core Assessment
- Duke University Center for the Study of Aging and Human Development (1978). Multidimensional functional assessment: The OARS methodology.
- Fillenbaum G (1988). Multidimentional functional assessment of older adults: The Duke Older Americans Resources and Services Procedures. Hillsdale, NJ, Lawrence Erlbaum Associates.
- Beck AT, Steer RA (1987). Manual for Revised Beck Depression Inventory. San Antonio, TX, Psychological Corporation.
- Beck AT, Epstein N, Brown G, Steer RA (1988). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting and Clinical Psychology, 56(6), 893-897.
- Aneshensel, C. S., Pearlin, L. I., & Schuler, R. H. (1993). Stress, role captivity, and the cessation of caregiving. Journal of Health and Social Behavior, 34, 54-70.
- Schwarzer R, Jerusalem M. Generalized Self-Efficacy Scale. In: Johnston M, Wright SC, Weinman J, eds. Measures in health psychology: a user's portfolio. Windsor, UK: NFER-NELSON, 1995.
- Stokes J P. (1983). Predicting satisfaction with social support from social network structure. American Journal of Community Psychology, 11, 141-152.
- Russell DW. UCLA Loneliness Scale (Version 3): Reliability, Validity, and Factor Structure. Journal of Personality Assessment 1996;66:20-40.
- van Act, H. M. E., Essink-Bot, M. L., Krabbe, P. F. M., & Bonsel, G. J. (1994). Test-retest reliability of health state valuations collected with the EUROQOL questionnaire. Social Science and Medicine, 39(11), 1537-1544.
- Campbell-Sills L, & Stein, M B (2007). Psychometric analysis and refinement of the Connor–Davidson resilience scale (CD‐RISC): Validation of a 10‐item measure of resilience. Journal of Traumatic Stress, 20, 1019-1028.
- Steger MF, Frazier P, Oishi S, Kaler M. The Meaning in Life Questionnaire: Assessing the Presence of and Search for Meaning in Life. Journal of Counseling Psychology. 2006;53:90.
- Semple SA, Smith CM, & Swash M. (1992). The Alzheimer disease syndrome. In S. Corkin, K. L. Davis, J. H. Growdon, E. Usdin, & R. J. Wurtman (Eds.), Alzheimer's disease: A report of progress in research. New York: Raven Press.
- Teri L, Traux P, Logsdon R, Zarit S, Uomoto J, & Vitaliano P. (1992). Assessment of behavioral problems in dementia: The revised memory and behavior problems checklist. Psychology and Aging, 7(4), 622-631.
- Rice DP, Fox PJ, Max W, Webber PA, Lindeman, DA, Hauck WW, & Segura E. (1993). The economic burden of Alzheimer's disease care. Health Affairs, 12, 164-176.
- Lawton, M. P., Kleban, M. H., Moss, M., Rovine, M., & Glicksman, A. (1989). Measuring caregiving appraisal. Journal of Gerontology, 44, 61-71.
The instruments in the Psychosocial Assessment have been selected, when possible, from among those for which reliability and population norms are available. Part 1 is administered to all participants. Part 2, consisting of measures used in the NYU Caregiver Initiative and replications, is administered only to caregivers. A Spanish version is administered by a bilingual (Spanish–English) staff member. Caregivers who are not participants at the Alzheimer’s Disease Center are identified in the database by their relatives’ identification numbers, with a prefix indicating type of caregiver (e.g., 1 = spouse, 2 = adult child). All instruments, except those marked by an asterisk, have been in use since 1998, providing a rich source of data for analysis of longitudinal change.
Other resources for researchers include the following:
- psychosocial data on Alzheimer’s Disease Center study participants with normal cognitive function and mild cognitive impairment that is linked by subject identification number and date to their clinical and psychological test results
- psychosocial data on family caregivers of our study participants with mild cognitive impairment and dementia
- core assessment (enriched since 2015) to evaluate individual characteristics such as resilience, self-efficacy, and optimism that may have an effect on psychosocial outcomes and functioning in the face of normal aging, cognitive decline, or caregiving
- a resource for recruitment for potential participants in studies to understand predictors of psychosocial wellbeing and studies of interventions to improve wellbeing
- opportunities for junior investigators to have access to data and mentoring by established researchers and social service clinicians
Resources for Study Participants
Participants in research at the Alzheimer’s Disease Center are offered a variety of psychosocial and research resources, including the following:
- a comprehensive evaluation of psychological and emotional wellbeing, conducted interactively with our trained staff, which provides participants with an opportunity to discuss concerns about aging, cognitive function, and social connectedness
- an opportunity to discuss personal life issues related to their concerns about cognitive status as well as other life events
- referrals, as needed, to counseling and support services and access to an on-call licensed clinical social worker
- access to information about psychosocial research and connection to empathetic and knowledgeable staff
- opportunity to contribute to research on the interplay between cognitive function, personality characteristics, and emotional and psychological wellbeing
- opportunities to participate in cutting-edge research aimed at improving wellbeing through enhancing social support
Resources for Family Caregivers
Caregivers play a crucial role in the lives of people with Alzheimer’s disease and other conditions that affect memory and cognitive function. The Alzheimer’s Disease Center offers resources to help family members at every point of their caregiving journey, including the following:
- a comprehensive evaluation of psychological and emotional wellbeing, conducted interactively with our trained staff, which provides participants with an opportunity to discuss concerns about the person they care for and the impact of caregiving on their other roles and their own emotional and physical health
- ongoing contact with the resources of the Psychosocial Core through all stages of caregiving, regardless of dementia severity of the participant
- referrals to services for caregivers and people with dementia, including the New York State–funded Alzheimer‘s Disease and Related Dementias Family Support Program at NYU Langone and other community services, as well as access to an on-call licensed clinical social worker
- opportunities to participate in studies of factors that affect caregiver wellbeing and new interventions designed to understand how best to help caregivers provide the best care possible
To learn more about the Psychosocial Core or the resources we have available for researchers, caregivers, or study participants, please contact core leader Mary S. Mittelman, DrPH, at email@example.com.