The prevalence of dementia, estimated to affect 47 million individuals in 2015 and projected to more than triple to 132 million people by 2050,1 signifies a gaping need for more comprehensive advance care planning. Advance care directives were originally developed to provide guidance to family and healthcare practitioners about end-of-life decisions for patients faced with a terminal prognosis. Because of the extended time frame of dementia, however, the standard advance care directive applied to managing negative outcomes of disease is often left unconsidered as long as the patient still has cognition.
Dementia Is Different
In a commentary published in JAMA in December 2017, Gaster and Larson2 point out that advance care directives are not “helpful” within the context of loss of cognitive function, and typically address specific conditions that have more definable prognoses involving pain and loss of consciousness. Because quality of life in dementia can be maintained with assistance, family and caregivers have difficulty determining when and how end-of-life decisions should be made.
“Ideally, a discussion with a patient about their own future care should occur before someone shows signs of cognitive impairment, because the ability of people to imagine a future state of themselves, and predict what the goals of care they would want for themselves in that future state, is a complex mental process,” Barak Gaster, MD, professor of medicine at the University of Washington, told Neurology Advisor. “This type of mental imagining very quickly becomes too difficult for someone even in the early stages of loss of cognitive function. Ideally, such guidance would be given in the 5 to 10 years before the onset of dementia. It really ought to be something that everyone considers when they hit the age of 65 or 70.”
The commentary points to specific features of an advance care directive targeted at the potential for developing dementia that adjusts to cognitive changes and takes into account patient beliefs and attitudes before the disease manifests.2 They advocate for a list of defined milestones for mild, moderate, and severe dementia, asking individuals to choose specific goals for care at each: to live as long as they could with interventions (or without), to receive care only where they are currently housed (and not be sent to the hospital), or to receive comfort measures only.
Philip McCallion, PhD, professor and director of the Temple School of Social Work in Philadelphia, Pennsylvania, concurred. “The earlier we start thinking about what someone’s wishes and desires will be, the better. For people with intellectual disabilities, this is at the core of the person-centered planning philosophy underlying care, so needs and wants in general are often well established,” he told Neurology Advisor. “An additional step relevant to advanced care is establishing who the most important people are that an individual would like involved in decision-making and what they would hope for in their last days,” he said.
“If a patient has lost the capacity to make medical decisions for themselves, the most important thing that can be done is for healthcare providers to engage families early on in advance care planning by asking everyone to examine whatever plans had previously been discussed or written down, and then try to imagine that if their loved one from 10 years ago could look down on themselves today, what is their best guess as to what they would have wanted for themselves? Would it be to continue with medical interventions with the goal of prolonging life, or would it be to shift their goals of care to focusing just on staying comfortable and easing any symptoms of suffering, such as pain and anxiety?” Dr Gaster said.
Adherence to Advance Care Directives
“The biggest challenge here is a lack of awareness that people with intellectual disabilities may have developed advanced directives, so education of healthcare providers is needed,” Dr McCallion said. “On the other hand, many providers are sensitive that there is a need to check on capacity to make decisions. What’s needed then is for healthcare providers to go beyond the simple question of who is the decision-maker, to also ask what decisions have already been made by the person regarding care that should be included in care plans?”
Dr McCallion coauthored a consensus statement published in 2017 in the Journal of Applied Research in Intellectual Disability3 that proposed more extensive guidelines for the use of an application of advance care directives in dementia that focused on integrated and coordinated efforts between care providers at various stages, developing specialized training for end-of-life care providers, as well as opening discussions of end-of-life care before dementia has significantly progressed.
A 2007 report from the US Department of Health and Human Services Assistant Secretary for Planning and Evaluation Office of Disability, Aging, and Long-term Care Policy4 provided some guidance for “discovering and honoring the treatment wishes of persons with intellectual disabilities,” although it showed that active treatment was favored over withholding of care, an important area that must be clarified for all patients, given the extraordinary life-preserving technologies now available.
Very few patients have an advance directive specific enough to include the case of dementia, Dr Gaster pointed out, and just because families have laid out clear goals of care for their loved one with dementia does not guarantee that those directives may be taken into account when healthcare providers make medical decisions. “The best way for families to have them taken into account is to carry copies of any documents that have been signed and insist on participating in medical decisions which are being made,” he said.
- Prince M, Wimo A, Guerchet M, et al. World Alzheimer Report 2015: The global impact of dementia: an analysis of prevalence, incidence, cost, and trends. London, England: Alzheimer’s Disease International; 2015. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf. Updated October 2015. Accessed January 2, 2018.
- Gaster B, Larson EB. Advance directives for dementia: meeting a unique challenge. JAMA. 2017;318:2175-2176.
- McCallion P, Hogan M, Santos FH, et al. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia. Appl Res Intellect Disabil. 2017;30:1160-1164.
- Stein GL. Advance directives and advance care planning for people with intellectual and physical disabilities. Washington, DC: US Department of Health and Human Services. https://aspe.hhs.gov/basic-report/advance-directives-and-advance-care-planning-people-intellectual-and-physical-disabilities. October 2007. Accessed January 2, 2018.