Capturing the complexities of informal caregiver networks: New measures to improve outcomes for informal care partners of people living with Alzheimer’s disease and related dementias (AD/ADRD)

Care partners (i.e., informal caregivers) of people living with with Alzheimer's disease and Alzheimer's disease
related dementias (AD/ADRD) often undergo considerable stress which can have a negative impact of the
health of both the care partner and the person living with dementia. Most dementia caregiving research
focuses almost entirely on the role of a “primary” care partner, which is most commonly the spouse or adult
child of the person living with AD/ADRD. Yet, for most people living with AD/ADRD, especially for those
individuals from diverse backgrounds, caregiving is typically provided through a network of multiple individuals
that extends beyond these more traditional family care partners. There is an increasing number of “non-
traditional” care partners, including step-kin and non-marital romantic partners, “blended families” (e.g., step-
children), “families of origin” (e.g., surviving siblings), and “families of choice” (e.g., personal communities of
people such as friends, partners, and other people with whom individuals share a kin-like relationship, but are
not connected by biological or legal ties), yet next to nothing is known about their experience as care partners
or how to characterize them. To address this oversight, we propose developing a new measurement system
that can capture and characterize the most important aspects of the care partner experience for these
individuals. This measurement system will include developing new, sophisticated computer adaptive tests (i.e.,
smart tests) that can ascertain a person's function level using only a minimal number of items without losing
the precision of a longer measure, as well as identifying, adapting and validating existing measures.
Specifically, we will identify the critical elements of the care partner role and develop new items (and/or identify
and/or adapt existing measures) using data from semi-structured interviews with non-traditional care partners
(n=20-30 people). These newly developed items will then be tested in a large, diverse sample of care partners
of people living with AD/ADRD (N=300 care partners of people living with AD/ADRD; a minimum of n=100 non-
traditional care partners and a minimum of n=100 racial/ethnic minority care partners). After this testing, a
state-of-the-art approach employing both classical and contemporary methods of test construction and
validation – including item response theory and computerized adaptive testing technology – will be used to
develop new computerized adaptive tests that permit brief and precise measurement of these critical concepts.
These new measures will be used to both characterize these non-traditional care partners and compare their
experience to other types of care partners. This will enable us to better understand and support these care
partners, ultimately improving their lives and that of the person for whom they provide care.

Grant Number: 1RF1AG083030-01
NIH Institute/Center: NIH
Principal Investigator: Noelle Carlozzi