The Administration for Community Living recently awarded a 3-year grant to our program to ensure that appropriate resources are available across the lifespan for aging adults living with intellectual and developmental disorders (I/DD) and their family caregivers. This grant award allows us to expand our reach to better serve aging persons with I/DD who may be at risk for developing Alzheimer's disease/dementia. As a family member caring for a person living with I/DD, we would appreciate you taking about 10 minutes to complete this brief survey. Our desire is to better understand the needs of you and your person. All findings from this survey will be confidential.

Thanks in advance for sharing your thoughts!

Sincerely,
Hospice of the Valley's Supportive Care for Dementia Program

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* 1. Are you aware that people living with Intellectual and Developmental Disorders (I/DD) may be at greater risk of premature aging in their 40s or 50s?

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* 2. Have you noticed any aging related symptoms or changes in the person you support with I/DD? (Please check all that apply)

  In the past month In the past year In the past 1-3 years No changes noted Not sure
Vision changes/cataracts
Hearing loss
Joint pain
Arthritis
Osteoporosis
Sleep pattern/apnea
Memory changes/confusion
Trouble with familiar tasks
Behavior Changes

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* 3. How would you rate the health of person you support living with I/DD?

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* 4. Who would you express your concerns to and/or seek information and assistance if/when you saw changes in your person's memory, thinking, behavior or slowed function? (Check all that apply)

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* 5. Are there changes in your person's behavior, personality, or function that you find challenging to manage? (Check all that apply)

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* 6. Do you keep a record or notes about changes you observe as the person you support ages to update those involved in his/her care?

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* 7. Are you aware that people living with I/DD may be at greater risk of developing Alzheimer’s disease/dementia with age?

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* 8. If your person living with I/DD was diagnosed with Alzheimer’s disease/dementia, how long did it take to get a diagnosis?

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* 9. How knowledgeable do you think healthcare and social service providers are about premature aging and increased risk of Alzheimer’s disease/dementia in the I/DD population?

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* 10. Have you had to learn about new health conditions and/or how to do new tasks to care for the person you support as he/she ages?

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* 11. Where do you go to learn about practical information, products, and solutions to care for the person you support? (please check all that apply)

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* 12. What type(s) of in or out of home assistance or service do you currently receive for the person you support? (check all that apply)

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* 13. What additional types/hours of in or out of home assistance would you like to assist with the care of the person you support? (check all that apply)

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* 14. What type of assistance or support might YOU need to better care for yourself? (check all that apply)

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* 15. How would you rate your health?

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* 16. Are you caring for any other family members?

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* 17. How often are you able to focus on your own health and self-care?

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* 18. Should your health decline significantly OR you predecease your person, which of the following back-up plans have you completed? (check all that apply)

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* 19. Do you have an emergency back up plan if you suddenly needed hospitalization or had to be gone from home for several days?

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* 20. How are you related to the person you support?

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* 21. What is the approximate age of the person you support?

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* 22. We are hosting two, 1-hour focus groups via Zoom for family caregivers of people living with I/DD and Alzheimer’s disease/dementia sometime in March. A focus group will talk with several family caregivers about many concerns or challenges families have. We hope to learn more what support can be helpful to I/DD families. A $25 gift card will be provided for your time. Would you be willing to contribute your knowledge and experience to help others?

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