Addressing the Current Challenges of Caring for Elderly Individuals with IDD

Every senior has the same rights and needs in reference to adequate housing, nutrition, medical care, leisure activities, employment and the ability to access sufficient resources. Therefore, as the life expectancy of persons with intellectual and developmental disabilities (IDD) increases, the challenges of caring for elderly individuals with IDD need to be recognized and addressed.


Recognizing and Addressing the Challenges of Caring for Seniors with IDD

1. Challenge: Reducing Mental and Physical Health Disparities

Unfortunately, numerous gaps in health disparities exist for adults with IDD.

These major gaps occur for several reasons, including:

  • Misdiagnosis
  • Underdiagnoses
  • Reduced opportunities to receive prompt medical care
  • Transportation difficulties
  • A lack of research related to seniors with IDD
  • Limited access to providers
  • The absence of accessible medical equipment

According to the PubMed publication, “Interventions to promote health: crossing networks of intellectual and developmental disabilities, and aging,” seniors with IDD need to receive the same health promotion interventions that are given to elderly individuals who do not have an intellectual and developmental disability. These interventions include health education, physical activity/exercise and mixed approaches. Furthermore, health care and screening services may be beneficial in the effort to decrease health disparities for seniors with IDD.


Organizations need to increase their staff members’ awareness that health deterioration among individuals with certain IDD etiologies, especially cerebral palsy and Down syndrome, can occur.  In addition, organizations that provide services to individuals with intellectual and developmental disabilities should encourage their staff members to integrate the multifaceted elements related to a patient’s acute health care with his or her behavioral health, the patient’s long-term service, support systems, as well as his or her community-based social and developmental support structures.


2. Challenge: Understand the Health and Social Service Needs of Seniors with IDD

All medical professionals who care for seniors with IDD must be fully trained and informed as to the specific challenges related to caring for elderly individuals with an intellectual and developmental disability. Furthermore, to ensure cooperation, staff members need to be encouraged to assist in organizing and planning assessments. Proper training of an organization’s frontline disability staff is typically considered an effective approach to improving the lives of individuals with IDD.

Areas of a patient’s life positively affected by disability staff training include:

  • Relationships and social inclusion
  • Health and wellbeing
  • Environmental planning
  • Service options
  • Person-centred planning approaches to support


Organizations need to improve the training their staff members who work in health-related areas receive. Furthermore, staff members who care for aging individuals and individuals with IDD should receive interdisciplinary training.

Staff members need to determine what steps they can take to be more effective assistants and supporters as they work with seniors with intellectual and developmental disabilities. Once staff members determine the changes that can be made, implementing their new, improved practices should minimize negative outcomes.


3. Challenge: Recognizing and Treating the Symptoms of Dementia, and Alzheimer’s in Individuals with IDD

Seniors with an intellectual and developmental disability can also develop dementia. Recognizing the symptoms of dementia in an individual with IDD can be challenging: Therefore, in order to assist organizations and families as they prepare to provide extended-care to a senior with IDD affected by dementia, the U.S. National Task Group on Intellectual Disabilities and Dementia Practices (NTG) adopted a set of guidelines to address the progressive nature of dementia.

Adults with IDD who are also affected by dementia experience several transitions as their decline progresses. Throughout this decline, an individual’s abilities and skills will change. As these changes take place, staff members need to be able to provide the person being served with adequate support.


Organizations should provide their staff with an early detection screening tool. This tool should allow the caregiver to document dysfunction and changes in behaviors. It should also provide the caregiver with information related to the noted changes that could signal dementia or mild cognitive impairment (MCI).


4. Challenge: Accurately Diagnosing the Stage of Dementia in Seniors with IDD

Questionnaires are frequently used as a means to diagnose dementia in individuals who do not have an intellectual or developmental disability. Questionnaires specifically designed to diagnose dementia in seniors with IDD are available and should be utilized by staff.


Use questionnaires specifically designed for diagnosing individuals with IDD.

Assessment for Adults with Developmental Disabilities (AADS)

This questionnaire focuses on the individual’s behavior and performance as it relates to his or her physical and cognitive decline. This questionnaire is ideal for addressing everyday behavior and functioning as well as to recognize any changes in behavior.

Dementia Questionnaire for People with Learning Disabilities (DLD)

The DLD questionnaire consists of numerous sub-scales and is designed for use at all levels of functioning.

Sub-scales include:

  • Long-term memory
  • Short-term memory
  • Orientation
  • Speech
  • Practical skills
  • Mood
  • Interest
  • Activity
  • Behavioral disturbance

Dementia Scale for Down Syndrome (DSDS)

The DSDS questionnaire is used to measure all the stages of dementia (early, middle and late). Furthermore, it includes a differential diagnosis scale and time course of deterioration.


5. Challenge: Integrative Service Interventions to Meet the Current Needs of the Individual Being Served

As dementia progresses, changes must be made to provide the senior with IDD the supports and supervision he or she needs. If making these changes is disregarded, according to the NTG, the individual may be unable to continue residing within a community living setting. Thus, negatively affecting his or her quality of life.


Any threats that could affect his or her ability to remain within the current living situation must be identified and plans for remediation should be created, and implemented immediately. Likewise, medical follow-up for treatment, surveillance and management of dementia should be planned for, occurring in tandem with the gradual support increases as the individual’s dementia progresses.

Care plan revisions should emphasize:

  • Continued community participation
  • Skill maintenance (as opposed to skill acquisition)
  • Spiritual engagement and support


Recommendations to Staff Following the Diagnosis of MCI or Dementia

Whether an individual with IDD is diagnosed with dementia or MCI, it is essential that medical personnel provide family members with information related to their loved one’s diagnosis and expected prognosis. By holding these meetings, family members, caregivers/staff can begin creating and implementing plans of care.

Trina McMillin

Trina brings to Relias a wealth of knowledge and personal experience related to the medical field, dental issues, mental health, and physical therapy techniques. She has worked in various positions over her career which includes being a phlebotomist, laboratory assistant and medical transcriptionist.

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