Family Caregiver Online Survey (Dementia and Swallowing Difficulties)

Primary outcomes

1. Demographic Information

   Time frame: Baseline

   Demographic Questionnaire

2. Eight-item Informant Interview to Differentiate Aging and Dementia (AD8)

   Time frame: Baseline

   The AD8 is a screening test that is sensitive to detecting early cognitive changes associated with dementia. AD8 is a scale from 0-8, with higher scores signifying more severe cognitive decline.

3. Global Deterioration Scale (GDS)

   Time frame: Baseline

   The Global Deterioration Scale (GDS) provides an overview of the stages of cognitive function for those suffering from a primary degenerative dementia such as Alzheimer's disease. GDS is a scale from 0-7, with higher scores signifying more severe cognitive decline.

4. International Dysphagia Diet Standardisation Initiative Functional Diet Scale (IDDSI-FDS)

   Time frame: Baseline

   The IDDSI-FDS is a validated tool that was created in order to capture degree of diet texture restriction. Degree of diet texture restriction has been previously used in the literature as a self- or informant-reported proxy measure for dysphagia severity given that it represents the functional impact of the dysphagia on daily eating. The scale ranges from 0-8, higher scores indicating less diet texture restriction.

5. Zarit Burden Interview

   Time frame: Baseline

   The Zarit Burden Interview is a valid, reliable, and widely used self-report measure designed to quantify general caregiver burden, incorporating both objective and subjective burden. It queries common areas of concern, including those related to finances, health, social life, and interpersonal relationships, and explores both personal and role strain. Scores range from 0-88, with higher scores signifying more burden.

6. Caregiver Analysis of Reported Experiences with Swallowing (CARES)

   Time frame: Baseline

   The CARES is a valid and reliable questionnaire designed to screen for dysphagia-related caregiver burden. The 26-item questionnaire explores the potentially burdensome, more objective behavioral and functional changes that have occurred as a result of dysphagia (Part A) and the more subjective stressors experienced by the caregiver (Part B). Scores range from 0-26, with higher scores signifying more dysphagia-related caregiver burden.

7. Caregiving Competence Scale

   Time frame: Baseline

   The Caregiving Competence Scale, developed for caregivers of persons with dementia and adapted for dysphagia management, is a valid and reliable four-item scale measuring caregivers' perceived adequacy of their own performance. Scores range from 0-12, with higher scores signifying more perceived competence.

8. Dysphagia-Related Knowledge Questionnaire

   Time frame: Baseline

   The Dysphagia-Related Knowledge Questionnaire is a study-specific measure assessing caregiver knowledge of functional aspects of dysphagia and dysphagia management, including key definitions, signs/symptoms, management techniques, consequences, and the dysphagia trajectory. Scores can range from 0-13, with higher scores signifying more dysphagia-related knowledge.

9. Preparedness for Caregiving Scale

   Time frame: Baseline

   The Preparedness for Caregiving Scale, adapted for dysphagia management, explores caregivers' perceived preparation related to caring for the physical and emotional needs of their care recipient. Scores range from 0-12, with higher scores signifying more perceived preparedness.

10. Multidimensional Scale of Perceived Social Support (MSPSS)

    Time frame: Baseline

    The MSPSS is a self-report measure of subjectively assessed social support that has been validated for use within a variety of populations across the lifespan. Scores range from 12-84, with higher scores signifying more perceived social support.

11. Eating Assessment Tool 10 (EAT-10)

    Time frame: Baseline

    The EAT-10 is a validated, widely used clinically, and easy-to-administer 10-item symptom-specific swallowing outcomes tool designed to understand the extent to which an individual's quality of life has been impacted by dysphagia. While generally completed by patients themselves, previous research has suggested that proxies can reliably report on observable symptoms, such as those rated on the EAT-10 related to swallow function. Scores range from 0-40, with higher scores signifying more severe dysphagia symptoms and greater impact to quality of life.