By: Beth Hutchason, MN, ARNP
Over the last 14 years doing palliative and hospice care, I found myself in hundreds of conversations with people who have dementia and people who love and care for them. This was mainly in a professional setting as a nurse practitioner, but I also personally had some of these difficult conversations with my family surrounding my dad’s diagnosis with Lewy Body dementia. Every encounter is unique as each individual carves their own path; however, I have had some conversations repeatedly. So, here are some of the things that I discovered along the way:
Many people, health care providers included, do not know what palliative care is and how it is different from hospice care.
Palliative care is a branch of medicine focused on caring for people with serious medical conditions. The focus is on preventing and relieving suffering and improving quality of life. It can be helpful at any point along an illness path but is often most beneficial in the last one to two years of someone’s life. Hospice is an intense version of palliative care meant for people at high risk of dying within the next six months. Hospice is a phenomenal benefit if it is consistent with someone’s goals (maximizing quality of life and avoiding hospitalization). As a result, there are ever-tightening rules about its use, and it is not uncommon for people to be on and off hospice several times.
Most people have not completed advance directives.
Advance directives are documents that tell others how you would like to be cared for if you cannot speak for yourself. A study in 2017 showed that only 37% of Americans have completed any type of these forms (Yadav et al., 2017). The most common directives are living wills and durable powers of attorney. Living wills provide an overview of a person’s desires for their care, but you need an order form to make these wishes happen. These order forms are called by various names (POLST in Washington, POST in Idaho). They provide direction to paramedics and other emergency workers to follow for your (or your loved one’s) care plan, specifically whether chest compressions (CPR) and life support should be attempted. A durable power of attorney (DPOA) document allows someone to speak on your behalf if you cannot. These documents address financial concerns, health care concerns or both. You do not need an attorney to complete these forms. Many free ones are available online; just be sure that you clearly understand what you are signing before you do so.
Facility placement is only covered by Medicaid or long-term care insurances.
These are some of the most difficult conversations that I have had with families. Most people believe that insurance will cover long-term facility costs, including memory care. This is simply not true. If someone has limited income and assets, they may be eligible for Medicaid, which will pay for some facilities. Long-term care insurance can be helpful and will cover a portion of the costs, although there is often a process to get to that point of payment. I would recommend planning early and speaking to a financial advisor about your options.
Asking for help can be challenging.
Many family caregivers barely manage by themselves when there are so many resources available! It pays to seek out assistance and resources as early as possible, particularly when your loved one has dementia. As a caregiver, the more support and information you have, the more smoothly providing care will become and a higher level of care will result, a win-win situation! Support groups, in person or virtually, are invaluable. Dementia caregivers become isolated and “invisible” in their homes. Support groups create a community of people experiencing similar challenges. Everyone in the group then realizes that they are not alone on this journey.
Caregivers are phenomenal.
The best “tricks” and “pearls” that I have to share are from caregivers of persons with dementia that I have visited over the years. The lengths that I have seen them go to are genuinely astonishing. Caregivers are knowledgeable, creative and determined. They have taught me so much. The most impressive thing that I have learned from them is the true meaning of the word “love.”
Beth Hutchason has been a registered nurse for 33 years and a nurse practitioner for 25 of those years. She has spent the past 14 years doing palliative care, a branch of medicine focused on improvement in quality of life and relief of suffering. During these years, she has had the opportunity to interact with many hundreds of patients with dementia and their families. They have taught her a great deal, which she hopes to share. She lives with her husband David, rescue dog Katya, and about 60,000 largely unnamed bees in Poulsbo, WA.
Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., Mante, A., Halpern, S. D., & Courtright, K. R. (2017). Approximately One In Three US Adults Completes Any Type Of Advance Directive For End-Of-Life Care. Health affairs (Project Hope), 36(7), 1244–1251. https://doi.org/10.1377/hlthaff.2017.0175