Journal Article:
Summary:
Daniel DeMarco Journal Article Assignment Rotation #8: Long Term Care
Advanced Dementia
Susan L. Mitchell, M.D., M.P.H.
New England Journal of Medicine
What is Dementia?:
- Defined as “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning”
- Clinicians have described “Advanced Dementia” as patients with a Stage 7 on the Global Deterioration Scale (Ranges from 1-7 with increasing number indicating increased severity). Features include:
- Profound memory deficits
- Inability to recognize family members
- Minimal verbal abilities
- Inability to ambulate independently
- Inability to perform any ADLs
- Urinary and fecal incontinence
Epidemiology:
- 2010: Estimated 600K Americans with ALZ disease died
- 2011: ALZ Disease is 6th leading cause of death in U.S.
- 2014: 5 million persons in U.S. affected by ALZ Disease, estimated to approach 14 million by 2050
Complications of Advanced Dementia:
- Clinical course of the disease outlined in Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study
- Median survival: 1.3y
- Most common complications: (1) eating problems, (2) febrile episodes, (3) pneumonia
- Eating problems
- Oral dysphagia, pharyngeal dysphagia, inability to feed oneself, refusal to eat
- May be addressed conservatively – small meals, hand feeding versus more aggressively – tube feeding; a Cochrane review showed that tube feeding does not improve survival, quality of life, nutrition, functional status, prevention of aspiration, or prevention/healing of pressure injuries; consider using decision-support tools for proxies
- Infections
- Urinary or respiratory particularly common
- Overprescribing of antimicrobials; clinical dilemma about when to start antibiotics in patients with + UA/Urine Culture
- 6-month all-cause mortality in patients with advanced dementia that suffered from pneumonia is 50%; CASCADE study – patients with advanced dementia and pneumonia – treatment with antimicrobials extended life an average of 273d longer, though discomfort was greater than those who did not receive antimicrobials
- Urinary or respiratory particularly common
- Oral dysphagia, pharyngeal dysphagia, inability to feed oneself, refusal to eat
Life Expectancy:
- Estimations are difficult. As such, access to palliative care should be determined based on desire for comfort care, not based on estimations of life expectancy/prognosis
Planning for Decision Making:
- Family/Friends/Health Care Proxies must be informed about the course of the disease, potential complications, and the importance of advanced care planning (including DNR/DNI and other advance directives, particularly do-not-hospitalize orders)
- Providers should discuss how proxies should function as surrogates
- Guide treatment decisions using goals of care (A prospective study revealed that in cases of advanced dementia, 90% of proxies stated that comfort was the goal of care)
Caring for Patients with Advanced Dementia (Palliative and Hospice Care):
- Pain often underrecognized/undertreated in this population; make palliative care/hospice care referrals where available
- In patients with agitation, nonpharmacologic approaches are preferred to other options (like antipsychotics), which can increase risk of death and have other untoward effects
- Reassess the medication regimen: continue medications that align with the goals of care. D/C those of questionable benefit
Improvement and the Future of Care:
- Improve education for patients, families/friends/proxies; improved engagement in advanced care planning; improvement in selecting interventions consistent with goals of care
Summary:
- Goal directed care; thorough understanding of risks versus benefits