Putting care plans in place as early as possible allows the person living with Alzheimer's disease or other types of dementia to share their wishes with family members, care teams and/or legal professionals, and helps to ensure they have a say in their future care. The following are recommended ideas on what to discuss and keep in mind when planning future care, including palliative and hospice care.
Communication with patient and family
Start conversations early on. As Alzheimer’s and other dementias progress, the person’s ability to consider future plans and actions becomes compromised.
- Have multiple, small conversations (among family, with doctor present)
- Use simple, easy-to-understand language
- Work to understand the patient’s wishes, beliefs and values
- Focus on preservation of autonomy and independence through progressive support measures, rather than dwelling on the terminal nature of the disease
Power of attorney
A power of attorney document (POA) allows a person living with Alzheimer’s or another dementia to name an individual — usually a spouse, domestic partner, trusted family member or friend — to make financial and other decisions when the person is no longer able.
- Encourage early assignment of POA
- Durable power of attorney (DPOA): takes place immediately upon signing
- Springing: takes place only when a person becomes incapacitated
- Can be all-encompassing or limited
- Laws vary by state, may need just a witness and a notary present at signing of POA, not an attorney
- DPOA can be contested
- If concerned, should be done with an attorney. Otherwise, a doctor’s statement about capacity, witness statements and video recordings can help.
- A person must have the capacity to understand what they are signing
- Recommend the family write a letter proclaiming the patient lacks capacity for financial decision-making and needs POA. Some financial institutions have their own forms that need to be filed.
Guardianship (conservatorship)
A guardian or conservator is appointed by a court to make decisions about a person's care and property. Guardianship is generally considered when a person living with Alzheimer’s or other dementia is no longer able to provide for their own care and either the family is unable to agree upon the type of care needed or there is no family.
- A legal proceeding, attorney required, in front of a judge, which assigns a decision maker to a legally incompetent person
- Can potentially cost between $3,000 - $8,000
- Time-consuming
- However, gives clear legal authority to decisions made
- Typically the only option to assign a decision-maker once a person lacks capacity if POA was not designated beforehand
- Also required if POA decides not to help or can no longer help
Power of attorney for health care
A power of attorney for health care allows a person living with Alzheimer’s or other dementia to name a health care agent to make health care decisions when the person is no longer able.
- Laws vary by state
- Often requires a document naming the person, signed and witnessed appropriately
- Some states require that an advanced directive (“living will”) be in place as well
- The health care agent also may make end-of-life decisions, such as providing nutrition through a feeding tube or giving do-not-resuscitate instructions to health care professionals
Physician orders for life-sustaining treatment
The physician orders for life-sustaining treatment (POLST) is a written medical order from a physician, nurse practitioner or physician assistant that helps give people living with Alzheimer’s or other dementia more control over their own care by specifying the types of medical treatment they want to receive.
- POLST forms differ by state
- Essentially a physician-guided and witnessed advanced directive
- Often also names a health care agent
- Once notarized, are legally binding and may usurp other documents
Palliative care
Palliative care is a specialty in medicine focused on treating the symptoms, pain and stress that accompany Alzheimer's and other dementias.
- Goal of managing symptoms and improving quality of life
- Involves reduction of medications
- Provides support for caregivers through respite, medication administration, education on legal/advanced care planning, etc.
- Helps anticipate inappropriate admissions, reducing crisis situations
- Allows for appropriate pain management
- Some services covered through Medicare Part B if deemed medically necessary
Hospice
Hospice care focuses on comfort and dignity at the end of life; it involves care and support services that can be of great benefit to people in the final stages of Alzheimer's and other dementias and their families.
- Includes palliative care and is generally restricted to the last six months of life
- Provided by a team of doctors, nurses, home health aides, social workers, etc.
- Covered by Medicaid and Medicare Part A with some associated costs
- Includes doctor services, nursing care, some medical equipment/supplies, therapy, hospice aide, etc.
Resources for families and caregivers
- 24/7 Helpline 800.272.3900: We can help your patients and their caregivers with questions and local support resources.
- Support groups: Patients living with Alzheimer's or another dementia and caregivers can find support and get advice at a local Alzheimer's Association support group.
- Alzheimer’s Association ALZConnectedⓇ: Our online community allows users to post questions about dementia-related issues, offer support, and create public and private groups around specific topics.
- Alzheimer's Association ALZNavigator™: This interactive online tool creates custom action plans for users based on their current situation and helps guide people living with memory loss and their caregivers to information, resources and next steps.