Section One: About your organization.

1. Name of your organization *

2. Name of the person completing this questionnaire *

3. Email of the person completing this questionnaire *

4. Country(ies) covered by your organization

5. Is your organization the primary advocacy and or service organization on dementia in your country?

Yes
No

If No, please provide name of which group is  

6. Is your organization’s primary function to provide (check all that apply)

advocacy
service for persons with dementia
family assistance
None of the above

7. Do your organization’s policies and mission include aiding or serving families with or persons with intellectual disabilities?

Yes
No

8. Do your organization’s policies and mission preclude and/or exclude aiding or serving families with or persons with intellectual disabilities?

Section Two: About intellectual disabilities

1. Have you any working cooperative agreements (formal or informal) with intellectual disability or Down syndrome organizations in your country?

Yes
No

2. Have you developed and/or published any joint (or singular) publications or flyers designed to aid families caring for or people with intellectual disabilities and dementia?

Yes
No

3. Have you developed or added to any web pages (on your own website) designed to aid families caring for or people with intellectual disabilities and dementia?

Yes
No

4. Have you added any links on your webpages specifically to organizations providing information for families caring for or people with intellectual disabilities and dementia?

Yes
No

5. Would you consider your government’s activities with respect to dementia and people with Down syndrome or other intellectual disabilities as

Outstanding
Adequate
Just beginning
Inadequate
Non-existent

6. Has your organization run into any difficulties or opposition to serving or aiding families caring for or people with intellectual disabilities and dementia?

Yes
No

7. If “yes” to #6, tell us what difficulties you have encountered

Resistance from the government
Resistance from within your organization’s administration
Resistance from national or local disability groups
Resistance from your organization’s members
Other (please specify)  

8. If you have developed or distributed materials, videos, publications, etc. related to people with Down syndrome and other intellectual disabilities, what are they? (Please mark all that apply)

Section Three: About your organization’s work in the area of intellectual disability

1. Do you get inquiries for information or support specifically for people with Down syndrome or other intellectual disabilities?

Yes
No
Don’t know

If NO, please SKIP to #5

2. How would you characterize the inquiries on the average (per month)?

Many
Few
Almost none
None

3. Are these inquiries (in #1)

On the increase
Steady
On the decrease

4. From whom do these inquiries tend to be from? (please mark all that apply)

Parents or other carers
Local organizations or agencies serving people with Down syndrome or other intellectual disabilities
Other types of organizations or agencies serving people with disabilities
Health workers
Government officials or workers
Advocates
Your members
Others (please describe)  

5. In what ways do you support people with Down syndrome and other intellectual disabilities who have dementia?

Provide speakers to groups of parents or carers
Provide printed materials on dementia and caregiving
Help organize programs
Advocate with government officials for services
Run day care or respite programs for families or carers
Other (please describe)  
We don’t do anything in this area

6. What other supports would you like to offer?

7. Do you use any resources provided by ADI on intellectual disabilities and dementia?

Yes
No

8. If yes to #7, please list which ones.

Section Four: National policy and context

1. How would you describe the level of awareness about dementia and people with intellectual disabilities in your country?

Excellent
Just beginning
Inadequate
Non-existent
Don’t know

2. Does your government have any special ministry, department or bureau whose responsibility is to specifically address the needs of people with Down syndrome and other intellectual disabilities and dementia?

Yes
No

3. If “yes” to #2, what is the name of the government office or group responsible for this?

4. Are there other organizations in your country to whom you refer enquirers to get further information/support for persons with intellectual disability and dementia?

Yes
No
Don’t know

5. If “yes” to #4, what is the name of the organizations (or names)?

6. Who is the key contact person within your government who is responsible for dementia-related services policy?

 
Thank you for taking the time to complete this survey – your help is much appreciated.

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