SUPPORT-D Intervention for Persons With Alzheimer's Disease and Their Caregivers

Palliative Care Telehealth Delivered Program of SUPPORT-D Intervention for Persons With Alzheimer's Disease and Caregivers Phase 2

The purpose of this research is pilot test a nurse led intervention previously used in patients with pulmonary fibrosis and their caregivers in a new population (persons living with Mild Cognitive Impairment or Alzheimer's disease and their caregivers. The researchers hypothesize improving advanced care planning in this population will result in enhanced quality of life over illness trajectory and improve safety for community dwelling PWD/CG dyads. Findings from this study will inform additional necessary adaptations required prior to conducting larger scale powered randomized control trial.

The SUPPORT-D intervention consists educational materials will be presented in a format with enhanced content (face-to-face virtually delivered by nurse interventionist via telehealth (e.g., MS Teams), with printed booklet, and identical digital content (electronic pdf and recorded videos of printed content). The SUPPORT-D intervention will be addressed in four sequential sections including: 1) understanding the disease 2) caring for myself; 3) information for the caregiver; and 4) planning for the future. Within the four sections of the intervention seven topics are addressed included symptom management, understanding your disease, putting safety first, ongoing conversations, respite care, palliative care, and alternative treatments. Participants will attend a total of 4 study visits across 8 weeks (approximately every 2 weeks).

30 items (T/F) summed total of correct items higher score indicates higher knowledge (scores range from 0-30)

4 items (5 point Likert scale) average score across items higher score indicates more acceptability of intervention (raw score ranges from 4-20)

4 items (5 point Likert scale) average score across items higher score indicates greater feasibility of intervention (raw scores range from 4-20)

12 items (4 point Likert scale) summed score with higher scores indicating greater caregiver distress (raw scores range from 0-48)

10 items (4 point Likert scale) summed score across items with higher scores indicate greater levels of stress (scores range from 0-40)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased physical function (raw scores range from 4-20)

4 item scale (4 point Likert scale) Standard t scores with higher scores indicating increased anxiety (raw scores range from 4-20)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased depression (raw scores range from 4-20)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased fatigue (raw scores range from 4-20)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased sleep quality (raw scores range from 4-20)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased satisfaction with social role (raw scores range from 4-20)

4 item scale (5 point Likert scale) Standard t scores with higher scores indicating increased pain (raw scores range from 4-20)

13 items (4 point Likert scale) summed score across items with higher scores indicating better quality of life (scores range from 13-54)

8 items rated from 1-10 mean score across items with higher scores indicating higher self-efficacy (raw scores range from 8-80)

32 items summed score across items with higher scores indicating higher risk for accidents (scores range from 11-47)

21 items (4 point Likert scale) summed scores across items with higher scores indicating better digital health literacy (scores range from 21-84)

4 items (5 point Likert scale) average score across items higher score indicates greater appropriateness of intervention (scores range from 4-20)

Inclusion Criteria: The participants in this study include persons with Alzheimer's disease (PWD) and their caregivers (CG. Persons with Alzheimer's Disease (investigators anticipate cognitive impairment within this group) 18 years old or older Diagnosis of Alzheimer's Disease or suspected Alzheimer's disease (FAST score < 4) Able to read and speak English (intervention in English) Caregivers (CG) > 18 years old Non-paid (eliminates professional caregivers) Provides care to someone living with Alzheimer's Disease or suspected Alzheimer's disease (self-report) Able to read and speak English (written materials in English) No diagnosis of cognitive impairment Exclusion Criteria: Inability or unwillingness to provide informed consent