WeCareToFeedDysphagia to Reduce Care-partner Burden Full-scale RCT

Burden will be measured using the Zarit Burden Scale (ZBI-22), a validated measure that assesses 22 statements related to personal strain accompanying caring for another person, which is rated with 5 frequency-related response categories, scored 0 (never) to 4 (nearly always). The total score ranges between 0 and 88 (higher scores indicating higher burden). A score greater than 21 has been suggested to indicate care-partner burden. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Burden will be measured using the Zarit Burden Scale (ZBI-22), a validated measure that assesses 22 statements related to personal strain accompanying caring for another person, which is rated with 5 frequency-related response categories, scored 0 (never) to 4 (nearly always). The total score ranges between 0 and 88 (higher scores indicating higher burden). A score greater than 21 has been suggested to indicate care-partner burden. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care Partner Quality of Life (CarerQol) will be measured using the validated Care-Related Qol-7D. The Care-Related Qol-7D measures well-being (CarerQol-VAS or visual analog scale) and subjective burden. The CarerQol-VAS measures happiness, using endpoints between 'completely unhappy' (0) and 'completely happy' (10). Subjective burden is measured on 7 dimensions (fulfillment, relational problems, mental health, daily activities problems, physical health, and support), and rated as (i) no, (ii) some, and (iii) a lot. The weighted score ranges from 0-100 (worst to best caregiving situation). Higher scores indicate higher quality of life. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care Partner Quality of Life (CarerQol) will be measured using the validated Care-Related Qol-7D. The Care-Related Qol-7D measures well-being (CarerQol-VAS or visual analog scale) and subjective burden. The CarerQol-VAS measures happiness, using endpoints between 'completely unhappy' (0) and 'completely happy' (10). Subjective burden is measured on 7 dimensions (fulfillment, relational problems, mental health, daily activities problems, physical health, and support), and rated as (i) no, (ii) some, and (iii) a lot. The weighted score ranges from 0-100 (worst to best caregiving situation). Higher scores indicate higher quality of life. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Engagement with WeCareToFeedDysphagia will be defined as percent of care partners viewing 2 or more pages within the tool. Success will be defined as greater than or equal to 45% of care partners engaging with the tool. Data will be captured via Google Analytics data to assess program usage in the domains of time/date of login, duration of page views, and document downloaded Engagement with the tool will be reported for the intervention arm only.

The Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Part A Checklist of Behavioral Changes is a 10-item questionnaire that measures responses to yes/no statements. Part A is scored 1 point for every yes response out of a maximum of 10 points. Scores are continuous, with lower scores indicating more self-efficacy with behavioral management. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Part A Checklist of Behavioral Changes is a 10-item questionnaire that measures responses to yes/no statements. Part A is scored 1 point for every yes response out of a maximum of 10 points. Scores are continuous, with lower scores indicating more self-efficacy with behavioral management. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Part B Measures of Subjective Caregiver Stress is a 16-item questionnaire that measures responses to yes/no statements. Part B is scored 1 point for every yes response out of a maximum of 16 points. Scores are continuous, with lower scores indicating more self-efficacy with stress management. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Caregiver Analysis of Reported Experiences with Swallowing Disorders (CARES) Part B Measures of Subjective Caregiver Stress is a 16-item questionnaire that measures responses to yes/no statements. Part B is scored 1 point for every yes response out of a maximum of 16 points. Scores are continuous, with lower scores indicating more self-efficacy with stress management. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q) is an 11-item instrument which assesses eating and feeding problems in people with late-stage dementia. The care partner assigns a score (0 to 2, never, sometimes, or often occurring) to each item; higher scores (maximum of 20) indicate greater feeding dysfunction. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Edinburgh Feeding Evaluation in Dementia Questionnaire (EdFED-Q) is an 11-item instrument which assesses eating and feeding problems in people with late-stage dementia. The care partner assigns a score (0 to 2, never, sometimes, or often occurring) to each item; higher scores (maximum of 20) indicate greater feeding dysfunction. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Quality of Life in Late-Stage Dementia Scale (QUALID) is an 11 item, validated scale administered to care partners for rating quality of life in late stage dementia. A 5 point scale (1-5) is used to capture the frequency of each item. Scores range from 11 to 55, with lower scores reflecting a higher quality of life. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Quality of Life in Late-Stage Dementia Scale (QUALID) is an 11 item, validated scale administered to care partners for rating quality of life in late stage dementia. A 5 point scale (1-5) is used to capture the frequency of each item. Scores range from 11 to 55, with lower scores reflecting a higher quality of life. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care partners will be asked to report acute care visits defined as emergency department visits and hospital readmissions for the patient they care for. Visits will be distinguished as aspiration-related or non-aspiration related complaints and reported as yes (took place) or no (did not take place). More frequently reported acute care visits will be associated with worse patient outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care partners will be asked to report acute care visits defined as emergency department visits and hospital readmissions for the patient they care for. Visits will be distinguished as aspiration-related or non-aspiration related complaints and reported as yes (took place) or no (did not take place). More frequently reported acute care visits will be associated with worse patient outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care partners will be asked to report dehydration events requiring intravenous or subcutaneous fluid administration for the patient they care for as yes (took place) or no (did not take place). More dehydration events will be associated with worse outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Care partners will be asked to report dehydration events requiring intravenous or subcutaneous fluid administration for the patient they care for as yes (took place) or no (did not take place). More dehydration events will be associated with worse outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Caregivers will be asked to report patient weight loss via a single-item question derived from the Mini Nutritional Assessment (MNA). Results will be averaged and categorized as weight loss greater than 3 kg, weight loss 1-3 kg, and no weight loss. More weight loss will be associated with worse outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

Caregivers will be asked to report patient weight loss via a single-item question derived from the Mini Nutritional Assessment (MNA). Results will be averaged and categorized as weight loss greater than 3 kg, weight loss 1-3 kg, and no weight loss. More weight loss will be associated with worse outcomes. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Neuropsychiatric Inventory Questionnaire (NPI-Q) is a validated tool with 12 behavioral domains for the assessment of neuropsychiatric symptomology designed for completion by caregivers of patients with Alzheimer's Disease and Related Dementias. The tool asks the interviewee to rate each symptom, if present, as mild, moderate, or severe. Total scores range from 0-36 with higher scores indicating greater prominence of dementia symptoms. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.

The Neuropsychiatric Inventory Questionnaire (NPI-Q) is a validated tool with 12 behavioral domains for the assessment of neuropsychiatric symptomology designed for completion by caregivers of patients with Alzheimer's Disease and Related Dementias. The tool asks the interviewee to rate each symptom, if present, as mild, moderate, or severe. Total scores range from 0-36 with higher scores indicating greater prominence of dementia symptoms. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message.