National Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia: The Importance of Advocacy for Dr. Elizabeth Perkins

With improved health care and quality of life, increasing numbers of adults with intellectual disabilities (ID) are living into old age. As more adults with intellectual disabilities experience age-related health problems, they will also exhibit symptoms of cognitive impairment and decline and possibly dementia.  However, early symptoms of dementia, which may be difficult to diagnose due to the effects of normal aging, are even more difficult to detect in persons who have lifelong cognitive impairments.  This presents several challenges for caregivers, whether a caregiver is informal (family member, spouse, friends) or formal (paid and professional staff).  

Not only must the caregiver be able to recognize and communicate symptoms to professional staff, they may need to advocate effectively on behalf of their family members or patients, and to locate healthcare providers who are familiar with the medical issues presented by aging adults with lifelong disabilities. 

Elizabeth Perkins, PhD, RNMHAs part of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG),Dr. Elizabeth Perkins, Research Assistant Professor and the Associate Director of the Florida Center for Inclusive Communities (FCIC), USF's University Center for Excellence in Developmental Disabilities, has had a unique opportunity to help develop the NTG Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia.  According to the Task Force, advocacy related to dementia and intellectual disability requires the representation of the interests of adults suspected of having or being impacted by dementia; all health matters, irrespective of the presence of dementia, receive attention; and the initiation and follow-through on contacts with the health system. 

The Guidelines offer a process for becoming a health advocate, questions to raise during physician visits that address concerns related to cognitive decline or health complications, and a set of recommendations for training content in healthcare advocacy and system integration with respect to dementia.  In addition, the Guidelines also make a series of recommendations that can be incorporated into the larger health advocacy process, such as: caregivers document and retrieve life histories to ensure that this information is available; healthcare providers and health advocacy organizations develop and implement collaborative live or webinar-based continuing education programs, and local organizations have a process for aiding family and agency caregivers locate and obtain access to resources which are capable of undertaking assessments for dementia in their locality. 

Dr. Perkins comments, “This is very significant work that highlights the need for equitable screening, treatment, and follow-up for people with ID who develop dementia. The real take home message is that caregivers who are well-informed about the type of information to record and share with medical professionals will also be able to advocate for the assistance and support their loved ones need and deserve. Of note is the essential necessity to have useful information from an individuals’ past as well as present. So often the best point of comparison for changes in behavior, personality, and cognitive functioning in individuals with ID are in fact the individuals themselves serving as a baseline.  

Dementia is a truly devastating disease but the range of pharmacological, behavioral, and environmental supports that maximize one’s quality of life as the disease progresses are equally effective for people with ID.  The fact that a person has a lifelong intellectual disability is not an acceptable reason for having a delayed diagnosis and inappropriate treatment. The work of the NTG both nationally and internationally to raise awareness, and promote training to healthcare professionals to be serve this vulnerable and all-too-often overlooked population has been invaluable.”

Dr. Perkins trained specifically in the field of intellectual and developmental disabilities (IDD) nursing, and holds both a PhD in Aging Studies, and BA(summa cum laude) in Psychology from USF.  Her current areas of interest include medical aspects of aging with IDD, quality of life issues of older family caregivers of adults with IDD, and compound caregiving (when older caregivers have multiple caregiving roles).  Dr. Perkins' current work at the Florida Center for Inclusive Communities is concentrated on improving both access to and quality of healthcare for persons with disabilities.  A Fellow of the American Association on Intellectual and Developmental Disabilities and current member-at-large of their national board of directors, Dr. Perkins also represents the FCIC on the Florida Developmental Disabilities Council and is an advisory member for the Disability and Health Program within the Florida Department of Health. 

For more about Dr. Perkins’ work on aging adults with intellectual disabilities, visit her webpage or email her at

For more about the National Task Force and its set of Guidelines, see

Bishop, K. M., Hogan, M., Janicki, M. P., Keller, S. M., Lucchino, R., Mughal, D. T.,Perkins, E. A., Singh, B. K., Service, K. & Wolfson, S. (2015). Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Intellectual and Developmental Disabilities, 53(1), 2-29.  doi:10.1352/1934-9556-53.1.2    PubMed abstractand link to article(may require subscription) or email Dr. Perkins directly for a reprint