We got a great email from Michelle, of VITAS Innovative Hospice, the other day. I liked it so much I asked Michelle if I could publish in the blog, and she graciously agreed.
So, here are Michelle’s and VITAS Innovative Hospice’s thoughts on “Alzheimers & Other End Stage Neurological Diseases”
As we know, families often find it difficult to discuss end-of-life care or to plan for illness. Elderly parents assume that their adult children can make legal decisions for them, and often these adult children take for granted that their parents have done the required planning. Misunderstandings, lack of ability to communicate, and cultural or religious views can all interfere with the quality of life for the elderly person. Healthcare professionals must be aware of these issues and should encourage healthy aging adults to begin a dialogue and make their families aware of their plans and healthcare choices. The risks, benefits, and outcomes of artificial feeding, hydration, mechanical ventilation, and cardiopulmonary resuscitation for a patient with advanced dementia and a limited life expectancy should be discussed with the family. Family support and education is vital.
Dementia has a major impact on society. The costs of caring for persons with dementia exceed $100 billion per year in the United States alone, and that amount does not include the formidable costs of informal care provided by family members and loved ones. The emotional toll and burden of caring for a relative with dementia is immense. This includes emotional distress, economic burden, lost work time, and strain related to balancing the needs of child care and caregiving for the older adult
Families and women in particular, provide 70-80% of care for frail older adults, with repercussions on the caregivers’ life and health. Primary caregivers are often spouses who are elderly and have medical problems themselves. Daughters frequently step in when spouses are not present. Caregivers must reconcile the demands of different spheres of life: personal; family; social; paid employment; and caring.
Researchers found patients with late-stage dementia – those who speak fewer than six words at a time and are completely dependent – lived on average only 16 months. And about 40 percent were in pain.
As mentioned before, Advanced Dementia has the same poor prognosis as terminal cancer. But only about 18 percent of family members say this has been explained to them by doctors. Those who did were far less likely to allow extraordinary measures like feeding tubes and emergency room visits – mostly because advanced directives existed and the responsible party knew what the patient’s wishes were. Therefore, its victims should be offered hospice care to spare them from futile and frightening procedures. Experts stress the goal of hospice care for patients with advanced dementia is hot to hasten their death; it’s to make their last days as comfortable as possible.
Final thought……Medicare has covered hospice care since the 1990s but is used on only one in 10 patients with advanced dementia. So please lean on Vitas to help educate you, your patients, your residents and your families about end stage diseases.