Rights of Older Persons

Supported decision-making (SDM) is a powerful alternative to guardianship, allowing individuals with intellectual and developmental disabilities (IDD) to make their own decisions with support from trusted people in their lives, rather than having those decisions made for them by a guardian appointed by the court. SDM is a model that protects autonomy, preserves rights, and fosters independence.

The success of supporting the SDM model and resulting SDM agreements (SDMAs) for people with IDD have led to hope that SDM can be equally successful in enhancing autonomy for older people. Among older adults, guardianship may be imposed based on perceptions that the older person has diminished capacity due to cognitive decline. Yet significant differences in the experiences of persons with IDD and older persons, including each group’s unique relationship with decision-making, suggest that the existing SDM model may not be directly applicable. This study aims to understand how older adults make decisions about life changes they may need to make due to increasing incapacity, which individuals older adults would like to be involved in decision-making, and what other support they might need for a SDM model to be effective and feasible.

For this project, Brookdale, working with our collaborators in Project Guardianship, will conduct a series of focus groups with approximately 100 older adults to better understand their decision-making process and support preferences in order to develop a SDM model and SDMAs that will best meet the needs of older adults. This SDM model and SDMAs will then be pilot tested in a subsequent research project involving providers serving this population as well as older adults themselves.

Ruth Finkelstein is the principal investigator for this project, which is funded by New York Community Trust, the Western New York Foundation, and the Harmon Foundation.