SurveyMonkey Powered Online Survey

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* 3. Which of the following do you identify with? (Please select all that apply.)

I am a caregiver for my spouse

I am a caregiver for my adult child

I am a caregiver for a sibling

I am a caregiver for my parent

I am a part time working caregiver

I am a full time working caregiver

I am a caregiver with young children

I am a caregiver with teenagers

I am no longer a caregiver, but I was caregiving for (please specify):

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* 4. How involved are/were you in the care of the person you know with Alzheimer’s disease/dementia?

Very uninvolved 

Somewhat uninvolved 

Neither involved nor uninvolved 

Somewhat involved 

Very involved

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* 5. Do you consider yourself to be:

Hispanic/Latino

White/Caucasian

Black/African American

Asian or Pacific Islander

Native American or Alaskan Native

Decline to answer

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* 6. Which source(s) of information did you use to learn about Alzheimer’s disease or dementia? (Please select all that apply.)

Your personal doctor

Your loved one’s doctor

Articles on websites (such as WebMD.com)

Internet message boards/support groups/chat rooms 

News media

Spanish news media

Medical journal articles

Friends

Family members

Co-workers

Advocacy organizations (e.g., Alzheimer’s Foundation of America, Alzheimer’s Association)

Local support groups

Houses of worship (e.g., temple, church)

Have not used any sources of information to learn about Alzheimer’s disease or dementia

Other (please specify)

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* 7. When your loved one was diagnosed with Alzheimer’s disease or another dementia, how prepared did you feel to deal with this person’s future?

Very unprepared

Somewhat unprepared

Neither prepared nor unprepared

Somewhat prepared

Very prepared

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* 8. At the time of diagnosis, were there any areas in which you could have used more or better support/information? (Please select all that apply.)

Emotional support

Financial support

Legal support

Support/Flexibility from my employer

General information about Alzheimer’s disease/dementia

Support/Advice from experienced caregivers

Information about treatment options

Support from family/friends

Local resources

Support from health care professionals

Information in my primary language

Support from health care professionals who spoke my or my loved one’s primary language

Support from health care professionals who understood me and my family

Support from my religious leaders/religious community

None; I got all the support I needed

Other (please specify)

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* 9. According to your health care professional, what stage of Alzheimer’s disease/dementia is the person you care for currently in?

Mild Cognitive Impairment (i.e., ongoing memory problems but no other symptoms)

Mild (i.e., slight memory loss, changes in speech patterns, mood, or personality, confusion, etc.)

Moderate (i.e., increased memory loss, shortened attention span, problems with language, trouble grooming, etc.)

Severe (i.e., complete loss of language and memory, increased sleeping, loss of physical coordination, etc.)

The doctor did not specify the exact stage

Not sure

I am no longer caregiving

Other (please specify)

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* 10. How did your life change since you started caring for someone with Alzheimer’s disease/dementia? (Please select all that apply.)

I have less time for myself

I have less time for my family

I’ve had to quit my job

I’ve had to take on less responsibility at work

I don’t see my friends as often as before

I have developed closer relationships with my family

I became a more compassionate person

I have developed closer ties to my community

I’m not able to go out as often as before

I am more open to asking for assistance

I have become more anxious, stressed, or burnt-out

I have felt abandoned by family

I have felt abandoned by friends

I have become more religious

I have become an advocate for the cause

My life did not change

Other (please specify)

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* 11. Where does or did your loved one with Alzheimer’s disease or another dementia live? (Please select all that apply.)

With me

At a nursing home/facility

At their house alone

At their house with other people/aides

At an assisted living facility

With another family member

Other (please specify)

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* 12. What is the highest level of education you have completed or the highest degree you have received?

Less than high school

High school graduate (or equivalent)

Some college or associate’s degree

Bachelor's degree

Post/professional degree

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* 13. Which of the following income categories best describes your total 2015 household income before taxes?

Less than $15,000

$15,000 to $34,999

$35,000 to $74,999

$75,000 to $124,999

$125,000 to $199,999

$200,000 or more

Decline to answer

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* 14. What topics would you like the caregiver books to cover? (Please select the topics you are interested in.)

Activities/Therapies

Adult Day Health Care

Alzheimer's Disease

Communicating with your loved one

Dementia Professionals: Assembling a Team

Dementia Signs and Symptoms

Depression and Mood Changes

Disease Prevention

Frontotemporal Dementia (FTD)

Genetics and Dementia

Home Safety

How do the Brain and Memory Work

How Is Dementia Diagnosed

Improving Memory

Lewy Body Dementia

Managing Behaviors

Managing Caregiver Stress

Medications

Mild Cognitive Impairment

Navigating the Social Stigma Around Dementia

Normal Aging Vs. Dementia

Nutrition and Exercise

Parkinson's Disease

Patient Advocacy

Personal Care and Hygiene

Posterior Cortical Atrophy (PCA)

Primary Progressive Aphasia (PPA)

Resources for Patients and Caregivers

Risk Factors and Causes of Dementia

Sharing The Diagnosis With Others

Sleep and Dementia

Stages of Dementia

Steps to Take Immediately After Being Diagnosed

Tools for Traveling

Vascular Dementia

Are there additional topics that are not listed and that you would like to include?

Arthur N. Rupe Caregiver Survey

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* 1. What is your gender?

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* 2. What is your age?

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* 3. Which of the following do you identify with? (Please select all that apply.)

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* 4. How involved are/were you in the care of the person you know with Alzheimer’s disease/dementia?

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* 5. Do you consider yourself to be:

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* 6. Which source(s) of information did you use to learn about Alzheimer’s disease or dementia? (Please select all that apply.)

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* 7. When your loved one was diagnosed with Alzheimer’s disease or another dementia, how prepared did you feel to deal with this person’s future?

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* 8. At the time of diagnosis, were there any areas in which you could have used more or better support/information? (Please select all that apply.)

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* 9. According to your health care professional, what stage of Alzheimer’s disease/dementia is the person you care for currently in?

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* 10. How did your life change since you started caring for someone with Alzheimer’s disease/dementia? (Please select all that apply.)

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* 11. Where does or did your loved one with Alzheimer’s disease or another dementia live? (Please select all that apply.)

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* 12. What is the highest level of education you have completed or the highest degree you have received?

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* 13. Which of the following income categories best describes your total 2015 household income before taxes?

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* 14. What topics would you like the caregiver books to cover? (Please select the topics you are interested in.)

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* 15. Please select your TOP FIVE (5) topics from the previous question, and rank them from 1 to 5 by order of importance (1 = most important topic).

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* 16. Is there anything else you'd like to share with us?