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.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
58
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).
Medical University of South Carolina
Charleston, South Carolina, United States
Change in Alzheimer's Disease Knowledge Scale (ADKS) Score
30 items (T/F) summed total of correct items higher score indicates higher knowledge (scores range from 0-30)
Time frame: baseline, at study completion, an average of 8 weeks
Acceptability of Intervention Measure (AIM) Score
4 items (5 point Likert scale) average score across items higher score indicates more acceptability of intervention (raw score ranges from 4-20)
Time frame: at study completion, an average of 8 weeks
Feasibility Score
4 items (5 point Likert scale) average score across items higher score indicates greater feasibility of intervention (raw scores range from 4-20)
Time frame: at study completion, an average of 8 weeks
Change Zarit Caregiver Burden Score
12 items (5 point Likert scale (0-4)) summed score with higher scores indicating greater caregiver distress (raw scores range from 0-48)
Time frame: baseline, at study completion, an average of 8 weeks
Change in Perceived Stress Scale Score
10 items (4 point Likert scale ranging from 0-4) summed score across items with higher scores indicate greater levels of stress (scores range from 0-40)
Time frame: baseline and at study completion, an average of 8 weeks
Change in Quality of Life-Alzheimer's Disease (QoL-AD) Score
13 items (4 point Likert scale ranging from 1-4) summed score across items with higher scores indicating better quality of life (scores range from 13-52)
Time frame: baseline and at study completion, an average of 8 weeks
Change in Self-efficacy for Caregiving Score
8 items rated from 1-10 mean score across items with higher scores indicating higher self-efficacy (raw scores range from 8-80)
Time frame: baseline and at study completion, an average of 8 weeks
Change in Safety Assessment Scale Score
16 items with response options ranging from 0 to 4. The minimum score is 0, indicating no safety concerns, while the maximum score is 64, indicating significant safety risks.
Time frame: baseline and at study completion, an average of 8 weeks
Appropriateness of Intervention Score
4 items (5 point Likert scale) average score across items higher score indicates greater appropriateness of intervention (scores range from 4-20)
Time frame: at study completion, an average of 8 weeks
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