Technology-Based Intervention Pilot Testing

Primary Care Screening and Intervention for Caregiving Assessment and Support for Patients With Dementia: Technology-Based Intervention Usability and Pilot Testing

This research project has three main goals:

(1) To create a new screening tool that helps primary care doctors spot signs of neglect in older adults with dementia. (2) To design a support program that can be delivered both in person and through a mobile app on Android phones. (3) To run a clinical trial with three groups of participants to find out how effective the screening tool is on its own, and how effective it is when combined with the support program-compared to standard care.

This current phase of the project focuses on parts of goals 1 and 2, as described below.

Elder abuse is common and has serious health consequences but is under-recognized and under-reported. Older adults with dementia are at much higher risk of mistreatment than other older adults, and the risk of mistreatment has been shown to be greater with increasing severity of dementia. This mistreatment is usually perpetrated by caregivers.

Screening for elder mistreatment and initiation of intervention in primary care clinics may be helpful, but few evidence-based tools or strategies exist. As few tools exist that may be effectively used in a busy clinical setting, evidence of the impact of screening and potential subsequent intervention on patient-important outcomes is lacking. Further, existing tools were developed for and studied in cognitively intact older adults and may not be appropriate for older adults with AD/ADRD.

In addition, elder mistreatment includes physical abuse, sexual abuse, verbal/emotional/psychological abuse, financial exploitation, and caregiver neglect. These different types of elder mistreatment represent very different phenomena, occur in various groups of older adults, and respond to very different intervention strategies. These discrepancies have made connecting positive identifications of mistreatment in the primary care setting to the next steps, including interventions, very challenging. Focusing on an intervention for caregiver neglect in older adults with dementia has the potential to address these challenges. Given that the severity of dementia represents a significant risk factor in the caregiving relationship, our goal is to provide support for dementia caregivers.

Caregiver Inclusion Criteria

• 21 years old or older

• Provides care for a patient of Weill Cornell Medicine/NewYork-Presbyterian who meets the following criteria: (pilot only)

  • Patient is at least 65 years old
  • Patient has diagnosed dementia
  • Patient requires assistance with at least 1 ADL

• Self-identifies as primary informal caregiver for an older adult

• Provides direct care (may include logistics, oversight, observation, as well as hands-on care, but must include at least some in-person assistance)

• Can read and speak English at a 6th grade level or above

• Not blind or deaf

• No active plan to disengage from providing care to the older adult within the next year

• Ability to travel to the COA or CABR for study activities and/or attend study session(s) virtually through Zoom on their personal device

Caregiver Exclusion Criteria

• Non-fluent English speaker
• Hired caregiver
• Provides care for a patient in hospice care
• Too ill or weak to complete the interviews (per the interviewer)