Families Coping Together With Alzheimer's Disease

Study Overview
=================
Brief Summary
-----------------
Two remote phone/zoom calls are required to assess experiences as a family coping with dementia.

Detailed Description
-----------------
Using a combination of paper or online surveys in addition to interactive visits with blood pressure monitoring, participants are observed interacting with each other. Blood pressure devices are mailed to their homes and only worn for six minute intervals. The first visit generally lasts one hour and the second visit 90 minutes.

Official Title
-----------------
Families Coping Together With Alzheimer's Disease

Conditions
-----------------
Family Research, Dementia

Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Parent must be 55 plus with symptoms or a diagnosis of dementia Adult child must be over 18 and involved in some way with assisting parent. Exclusion Criteria: -

Ages Eligible for Study
-----------------
Minimum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| dyad<br>parent with dementia and an adult child who is a caregiver | |

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Caregiver demand appraisals | (1a) Caregiver demand appraisals: 6 items from the 12-item Zarit Burden Interview (ZBI) will assess caregiver appraisals of demands (e.g., That because of the time you spend with your relative that you don't have enough time for yourself?. Caregivers self-report aspects of burden on a scale from 0 (never) to 4 (nearly always; α= .86). Higher numbers indicate higher demands. Administration is 2.5 minutes | Baseline and one year | 
| Caregiver perceived stress | (1b) Caregiver perceived stress: 6 items from the 12-item Zarit Burden Interview (ZBI) will assess caregiver perceived stress (e.g., Stressed between caring for your relative and trying to meet other responsibilities (work/family)?). Caregivers self-report aspects of burden on a scale from 0 (never) to 4 (nearly always; α= .86). Higher numbers indicate higher stress. Administration is 2.5 minutes. | Baseline and one year later | 
| Caregiver negative Coping | The Brief COPE Inventory is a shortened version (28 items) of the COPE inventory in which respondents indicate how often they use a particular coping strategy under stress as ranked on a 4-point scale with 1 (I haven't been doing this at all) to 4 (I've been doing this a lot). Examples of items include I've been using alcohol or drugs to help me get through it. and I've been criticizing myself (α=0.72, 0.84, 0.75 for emotion, problem, and dysfunction focused subscales). Higher scores indicate poorer coping. Administration is 10 minutes | Baseline and one year later | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Relational Functioning | The Relationships Inventory will measure the degree to which individuals perceive that they can rely on their parent or child for help and support when needed (e.g., to what extent can you count on your parent/child for help with a problem? to what extent can you count on your parent/child to give you honest feedback, even when you might not want to hear it?). Ratings will be made on a scale from 1 (not at all) to 5 (very much; α=.79). Four additional items will assess the degree to which individuals perceive that their parent/child is a good support-provider (e.g., overall, my parent/child is a good support-provider using a scale from 1 (strongly disagree) to 7 (strongly agree). Higher numbers indicate higher relationship functioning. Administration is 5 minutes. | Baseline and one year later | 
| Health | Health-related quality of life will be assessed using the 12-item Short Form Survey (SF-12) version 1.0, documenting the extent of limitations in a number of domains. Higher scores indicate better physical and mental health-related quality of life. It has been used with both persons with ADRD and caregivers. Administration is 5 minutes. The minimum and maximum scores are 0 and 100. | Baseline and one year later |