A Call To Action; We Need Your Input Now!

As you will recall, NAPA is the National Alzheimer's Project Act, which Congress created to enable the government to create a national plan on dealing with Alzheimer's disease.   The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was created to enable the needs and interests of people with intellectual disabilities and their families - who are affected by dementia - to be considered as part of the NAPA process.

The Alzheimer's Association has set up a website on NAPA and has directed the state chapters to hold listening sessions for gathering input from the public. To this end, it is critically important we make as much noise as possible about the needs and interests of people with intellectual disabilities and their families to the Alzheimer's Association -- as they will be working to influence the agenda of the NAPA Council.  Your contact with the local and state Alzheimer's Association chapters' input sessions will enable intellectual disability interests to be added to their list of concerns raised. We suggest first going to http://napa.alz.org/share-your-feedback and filing your comments on their website. Locations and dates of the listening sessions can be found at http://napa.alz.org/category/events

We've prepared some 'talking points,'  but we expect you will have some personal experiences you can share that will go beyond these.

+ Certain adults with intellectual disabilities are at greater risk of Alzheimer’s disease
+ Most of these adults – primarily with Down syndrome – are living at home with aging parents
+ Both they and their aging parent caregivers should be included in any local planning for aiding people with dementia and their caregivers
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+ Most physicians and health workers are unfamiliar with how dementia is evident in adults with intellectual disabilities and may misdiagnose the condition
+ It is difficult to find trained and experienced clinicians to diagnose dementia in adults with intellectual disabilities
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+ Many local agencies that serve adults with intellectual disabilities are ill-prepared and under-funded to identify and provide services for adults with dementia and intellectual disability
+ Most local agencies do not have the resources to set up programs to aid family caregivers who are caring for a son or daughter with dementia and intellectual disability
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+ The most useful services for continued community care are small group homes and family caregiver supports
+ Preventing admission to nursing homes and other ‘institutional’ care settings is the goal for adults with intellectual disability affected by dementia
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+ National planning needs to also include consideration of the needs of adults with intellectual disabilities affected by dementia
+ The national efforts under NAPA need to include mention and consideration of adults with intellectual disabilities affected by dementia