Share Your Opinion on the Stigma of Dementia with Alzheimer’s Disease International

Calling all caregivers and persons with dementia!

Have you ever felt stigmatized because you or your loved one has dementia? Do you feel that your family is treated with respect, dignity, and acceptance in the context of your loved one’s disease? Do you have adequate opportunities to access the resources you need to provide dementia care?

Here’s your chance to express your opinions and share your experiences about these very important issues to an organization that has clout and the power to make a difference.

(c) Alicja Sto
(c) Alicja Sto

Alzheimer’s Disease International (ADI), the federation that connects the various Alzheimer’s-related associations from around the world, is getting ready to prepare its World Alzheimer Report 2012. While ADI’s report in 2011 focused on the benefits of early detection and treatment of Alzheimer’s and related disorders, this year’s report will center on the realities and consequences of stigma related to dementia.

To ensure that its report reflects real-world experiences, ADI is asking people with dementia and their caregivers to complete an online survey by June 17, 2012. For those of you who are understandably skeptical of online surveys, here are some details that may quell your anxieties:

  • Responses are anonymous.
  • Questions appear in an easy multiple-choice format.
  • Comments are welcome but optional.
  • ADI is a super-cool organization (my two cents).

I highly encourage you to participate, as I am familiar with ADI and feel it’s a reputable and effective group. I’ve consulted its website many times when I needed to find an Alzheimer’s-related organization in another country. ADI works closely with the World Health Organization and can translate large amounts of data into actionable recommendations.

ADI will present the results of the survey in its World Alzheimer Report 2012 on September 21, which is World Alzheimer’s Day.

If you participate in the survey, let us know here! And thank you for speaking out about the discrepancies between how dementia is perceived and how families faced with dementia should be treated.

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