Guidelines for Dementia-related Health Advocacy for Adults with ID and Dementia

These NTG guidelines were developed to help caregivers, whether family members or staff, to prepare for and advocate during health visits. The NTG developed these guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations. With increasing numbers of adults with intellectual disability living into old age the end result is that more such adults are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with intellectual disability are often masked by their lifelong cognitive impairment, combined with the benign effects of aging. Caregivers need to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia. It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimer’s disease and other forms of dementia.