Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

BACKGROUND: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. METHODS: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. RESULTS: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. CONCLUSIONS: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.

Persons with developmental disabilities exposed to interpersonal violence and crime: strategies and guidance for assessment.

PURPOSE: Persons with developmental disabilities are frequently exposed to interpersonal violence and crime, directed at themselves and others, and are in need of specific interventions tailored to their unique needs. CONCLUSIONS: What may be different in comparison to other survivors are the:ways therapeutic interventions are adapted so that fears and ongoing concerns can be effectively expressed and addressed. PRACTICE IMPLICATIONS: Persons with developmental disabilities may benefit from a variety of interventions in the treatment of intrapsychic trauma after exposure to interpersonal violence and crime.

Issues in aging. The role of the nurse in the care of older people with intellectual and developmental disabilities.

Many people with I/DD are growing older and in increasing numbers. Generally people with I/DD experience the same physical process of aging as do individuals without lifelong disabilities with the exception of those individuals who have Down syndrome who may show physical signs of aging as much as 20 years earlier. Individuals with I/DD may experience some unique concerns associated with aging with similar or even higher rates of age-related conditions than do older persons without lifelong disabilities [20]. Geriatric care principles will guide nurses caring for older people with I/DD, beginning with the assessment of functional status to determine interventions for developmental, aging, and health concerns and health promotion. Nursing interventions must be individualized both according to the person's preferences and health status. A primary goal is to prevent acute exacerbation of any underlying pathological process, prevent unnecessary deterioration of the older individual's physical condition, and maintain optimum physical and mental function. Nurses can provide individuals who are aging and their families or caregivers the needed anticipatory guidance about life transitions during the aging years, including palliative end-of-life care. This is an exciting and challenging time for nurses who care for aging people with I/DD. John F. Kennedy once said, "It is not enough for a great nation to have added new years to life. Our objective must be to add new life to those years." As a profession, nurses have historically added years to life. The challenge of nursing is now to add quality life to those years for all older persons with I/DD.