While great strides have been made recently in improving endof-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.KEY WORDS: palliative care; end-of-life care; dementia; Alzheimer's disease; hospice.
To evaluate the impact hospice enrollment has on the terminal care of patients with dementia and describe the symptom burden these patients experience, caregivers of dementia decedents were assessed in a mortality follow-back survey. Patients had been managed through academic outpatient geriatric clinics in Chicago, IL. A total of 135 family members or other knowledgeable informants of persons who had died with dementia were queried about the patient's preferred location of death, location of death, satisfaction with patient care, and assessment of patient's pain and most bothersome symptom. Patients who were enrolled in hospice were significantly more likely to die in their location of choice (odds ratio [OR] 9.67; 95% confidence interval [CI] 2.57-37.0), and less likely to die in the hospital, (OR 0.04; 95% CI 0.01-0.18), compared to nonenrollees. Caregivers of hospice enrollees were more likely to rate patient care as excellent or very good (OR 5.65; 95% CI 2.61-10.34), compared to nonenrollees. Over 50% of caregivers of hospice enrollees and nonenrollees reported patient pain at a moderate intensity or higher on average in the last two weeks of life. No effect was observed between a caregiver reporting pain at a moderate level or higher and whether the patient was enrolled in hospice (OR 0.58; 95% CI 0.22-1.54). Hospice enrollees did not experience improvement in their most bothersome symptom's frequency, severity, or amount of distress caused (P=0.21, 0.39, 0.95, respectively), compared to nonenrollees. These results suggest that dying patients with dementia who are enrolled in hospice programs are more likely to die in their locations of choice and their caregivers are more likely to perceive that care is excellent or good than those who do not obtain hospice services. No effect on pain or other symptoms could be demonstrated in this analysis.
We find a notable discord between physician opinion, reported practice, and the literature regarding PEG tubes in advanced dementia that reveals some of the barriers to decreasing the referral of these patients for PEG.
To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient-caregiver dyads, a cohort study enrolled patient-caregiver dyads at a primary care geriatrics clinic. Thirty-two percent of persons with dementia self-report pain "right now." Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater. Fifty-two percent of caregivers report their care recipients with dementia are in some pain "right now." Of these, 52% report slight/mild pain, 30% moderate, and 18% severe pain or greater. Fifty-nine percent of dyads agree on the presence or absence of patient pain. In multivariate analysis of dyadic congruence of pain reports by patient and caregiver factors, only patient factors predicted congruence. The odds of congruence of pain reports increase 3.7 (1.2-12.3) if the patient is male and decrease 0.938 (0.93-0.99) as the patient becomes more agitated. These findings suggest that community-dwelling persons with dementia report less pain than those in the nursing home and caregivers do a fair job of predicting patient pain.
The aging of the U.S. population has resulted in a large number of persons with multiple, chronic illnesses and gradual functional decline. Many older adults with these conditions are homebound and have great difficulty accessing medical care. They are also more likely to suffer from unaddressed symptoms and end-of-life care needs. Certain groups, such as African-American patients and patients with dementia, are even less likely to access palliative care and hospice services. Although the informal caregivers attending to such persons may become overwhelmed without adequate support, palliative care, which covers a broad population, is an optimal way to address many of these needs. This article describes a unique, urban, home-based geriatrics palliative care program (Palliative Access Through Care at Home (PATCH)) designed to address some of these unmet needs. After 1 year of providing service, a mixed-methods study consisting of chart review, telephone interviews, and face-to-face interviews was conducted to assess caregiver expectations of and satisfaction with the program. Caregivers for the elderly, mostly African-American patients, more than half of whom had dementia, were overall very satisfied with their experience, despite the large amount of time necessary to provide the care that patients required. Themes extracted during qualitative analysis were the desire to remain at home, the need for easy access to a practitioner specializing in geriatrics and palliative medicine, and the challenges of transitions of care. PATCH was able to address many of these needs and provide high levels of caregiver satisfaction.
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