Dementia is an irreversible progressive brain disorder with neurodegenerative symptoms including decline in memory, reasoning and communication skills, and a gradual loss of skills needed to carry out daily living activities. It is estimated that there are an estimated 5.8 million older adults in the United States with dementia. That number is expected to grow as the number of individuals entering older age increases. By 2050, the number of individuals aged 65 and older with dementia is expected to climb to 14 million. Alzheimer’s disease, the most common cause of dementia, is the sixth-leading cause of death among all adults and the fifth-leading cause of death for individuals age 65 and older.

In its advanced stages, most individuals with dementia experience irreversible loss of mental and bodily decline including:

  • Inability to recognize loved ones
  • Inability to recognize surroundings
  • Inability to speak or make oneself understood
  • experiencing individuality changes
  • Inability to respond to the environment, speak or control movement

As dementia progresses, the ability to consider future thoughts and actions becomes compromised, greatly affecting an individual's decision-making abilities. Caregivers and loved ones often find themselves in a position where they need to inform or make decisions on behalf of the individual with dementia. Individuals with dementia, and their families, are much in need of a palliative approach to their care, especially through advance care planning (ACP) and support with decision-making.  Advance decision making is important in achieving high quality future care consistent with that of the person’s wishes.

There are many challenges in providing palliative care to this group of individuals, some of which may be amenable to advance care planning to support individuals with dementia to have a greater influence on their care as their illness progresses. ​​ACP differs from general care planning in that it is usually used in the context of progressive illness and anticipated deterioration.

ACP supports individuals who have the capacity to anticipate how their condition may affect them in the future. If the individual wishes, they can set on record choices about their care and treatment and/or an advance decision to refuse a treatment in specific circumstances, the premise being that such plans can be referred to by those responsible for their care or treatment, whether its healthcare providers or family carers, in the event that they lose capacity to make decisions as their illness progresses.

Advance care planning can help families affected by dementia to better plan for their loved ones future care. Successful decision-making for a family affected by dementia involves sharing knowledge, experience and wishes and preferences for care across all stakeholders: the individual with dementia, loved ones, caregiver(s) and healthcare providers. It can be challenging to support this balance of interests and needs as effective support of shared decision-making requires advocacy for the individual with dementia and support for family members in understanding their own wishes and preferences in any care situation.

Recent studies have explored the experience of ACP interventions in individuals with dementia and elements of satisfaction and dissatisfaction. These studies highlight a sense of relief in participating in ACP, particularly from a family caregiver’s perspective. Caregivers reported satisfaction in having an opportunity to speak on the person’s behalf and subsequently contribute to the avoidance of distress through ‘futile’ procedures. Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future.

There is debate on when the best time is to offer ACP to individuals with dementia. Many healthcare providers feel that entering into discussions about ACP for is both too soon and insensitive within the initial diagnostic process. However, advance care planning in dementia needs to take place early, while the individual has sufficient mental capacity to consider their preferences and make decisions for their future.
Recommendations for healthcare providers:

  • ACP discussions need to be initiated as early after the diagnosis of dementia since decision-making capacity may be lost early on in the disease trajectory.
  • Facilitation of ACP requires specific skills and competencies such as advanced communication skills, expert knowledge of dementia, its course and prognosis.
  • Support ongoing ACP discussions throughout the trajectory of dementia to adapt to changing needs within the disease trajectory.
  • Support shared decision-making by involving all family stakeholders and not assuming family members will always know the wishes and preferences of the individual with dementia.

Partnering with an experienced Advance care planning partner whose sole focus is ACP and palliative care is critical in the successful implementation of these interventions. Our deep experience in goals of care planning allow us to provide meaningful and beneficial guidance to individuals through the full lifecycle of the ACP process including discussion, creation, distribution and implementation of care plans. This approach creates a supportive, guided process for members to create high-quality care plans while also reducing the time-intensive, complex burden of ACP discussions for provider physicians and care managers.

Iris takes ownership of the entire ACP process and champions the benefits of ACP to your patient members and physicians. We take the burden of having these conversations off of the providers and remove the barrier to having these discussions. Our team manages the entire ACP process including member identification, engagement, expert led ACP facilitations, documentation completion, and distribution to family and care teams.

During initial and follow up conversations our facilitators can make palliative care referrals, we connect people to in-person palliative care based on symptoms requiring medical management, utilization patterns, or challenges in social determinants of health.

If you’re ready to explore an advance care planning partner, Iris is here to help you identify specific care planning solutions for your high risk patient populations.