Caregiving refers to attending to another individual’s health needs. Caregiving often includes assistance with one or more activities of daily living (ADLs) such as bathing and dressing. More than 15 million Americans provide unpaid care for people with Alzheimer’s disease and other dementia. Eighty-five percent of unpaid help provided to older adults in the United States is from family members. In 2014, caregivers of people with Alzheimer’s disease and other dementia provided an estimated 17.9 billion hours of informal (that is, unpaid) assistance, valued at $217.7 billion. In 2015 the direct costs to the United States of caring for those with Alzheimer’s will total an estimated $226 billion.
A message for newly diagnosed individuals and their families
Importance of Early Detection
Dementia presents many problems and challenges for the adult affected by it and their care partners. When dementia can be identified early, there is potential to proactively address signs and delay symptoms. Services and supports may be more effective if offered prior to significant thought and/or function change. Early assessments can help in identifying potentially treatable conditions that are causing symptoms. Early detection can lead to greater opportunities to impact quality of care and quality of life. Diagnosing dementia in individuals with Intellectual or Developmental Disabilities is more difficult than the general population due to certain barriers some of which include:
- Inability to report– Individuals with I/DD may not be able to report signs and symptoms
- Lack of assessment tools– Most generally used dementia assessment tools are not relevant for people with I/DD as the measures often test for skills or knowledge not often possessede by adults with I/DD.
- Measuring change– Difficulty measuring change from previous level of functioning. A baseline is needed to detect changes over time, the NTG-EDSD is the recommended assessment to determine a baseline.
- Diagnostic overshadowing– Subtle changes may not be noticed or assumed to be related to existing I/DD.
- Lack of medical history– Due to staff turnover, family unavailable for information, health care provider turnover and many general practitioners aren’t trained to serve individuals with I/DD
NTG- Early Detection Screen for Dementia
The National task Group Early Detection Screen for Dementia (NTG-EDSD) is an informant-based rating tool for use with adults with intellectual and developmental disability who are suspected of having changes in thinking, behavior, and adaptive skills suggestive of dementia. The NTG-EDSD was not designed to diagnose dementia, but to help in the early identification and screening process, as well as to provide information to begin the dialogue with health care professionals.
When should the screening tool be used and who should administer it?
This instrument can be used annually or as needed for adults with Down syndrome beginning at age 40, and with other at-risk persons with I/DD when suspected of experiencing cognitive change.
The form can be completed by anyone who is familiar with the adult (has known them for more than six months) such as a family member, support worker, or a behavioral/health specialist using information gathered through observation or from the adults personal record.