Care Planning for People with Dementia

There are many things to consider after a diagnosis of Alzheimer’s disease or another dementia. Professionals recommend starting discussions about care planning for people with dementia early – which include arrangements for legal, financial, and healthcare matters. It might be helpful to retain the services of a lawyer when preparing advance planning documents.

Important Medical Documents to Have in Place

Advance Healthcare Directive

An advance healthcare directive is a legal document that communicates healthcare wishes. In most cases, these documents must be prepared while the person is deemed to be “competent” according to legal standards. There are two elements in an advance healthcare directive:

• A Living Will records a person’s wishes for medical treatment near the end of life. It may describe how much or how little life-sustaining treatment (ventilation, tube feeding, etc.) is desired. It also includes preferences for other major healthcare decisions.
• A Power of Attorney (POA) for Healthcare designates a person, called an agent or proxy, to make healthcare decisions when a person can no longer do so. The agent can help ensure the living will is followed or approve treatment in case of unplanned circumstances. It is important to note that a person has the right to refuse unwanted treatment regardless of decisions made by their agent.

Physician’s Orders for Life-Sustaining Treatment (POLST)

A POLST form complements the advance healthcare directive for people who have a severe or late-stage condition. While an advance directive provides general guidance on treatment preferences, the POLST is based on the person’s current medical condition. The POLST form is transferred wherever the person goes and outlines specific procedures that must be followed by emergency responders. This form can be approved by a person’s healthcare agent if the person is unable to do so themselves.

Do Not Resuscitate (DNR) and Do Not Intubate (DNI) Orders

A DNR order instructs health care professionals not to perform cardiopulmonary resuscitation (CPR) if a person’s heart stops or if they stop breathing. A DNI order instructs that a person not be put on a breathing machine. These orders are signed by a doctor and put into a person’s medical chart. They may not be necessary if a POLST is on file. Many professionals now refer to this as Allowing Natural Death (AND).

Important Financial Documents to Have in Place

Power of Attorney (POA) for Finances

A POA for finances names someone to make financial decisions, such as buying or selling property, when a person cannot do so themselves. The POA can be “springing, ” meaning that it springs into action if the person is deemed incapacitated, or “durable, ” meaning it becomes effective as soon as it is signed and continues to be effective after a person is incapacitated.

Living Trust

A living trust provides instructions about a person’s estate and appoints someone, called the “trustee, ” to hold title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage their own affairs. A living trust gives a detailed plan for property distribution. It also helps avoid the expense and delay of probate (in which the courts establish the validity of a will).

Will

A will indicates how a person’s assets and estate will be distributed upon death. It can also specify funeral and/or burial arrangements.

Health Insurance Portability and Accountability Act (HIPAA) Waiver

A legal document that allows an individual’s health information to be used or disclosed to a third party. This document must be signed to be able to speak to a doctor on another person’s behalf.

Steps for Getting Affairs in Order

• Gather information about income, property, investments, insurance, and savings.
• Meet with a lawyer to set up long-term plans and legal documentation. If you are unable to access a lawyer, there are legal service organizations that may be able to provide free or reduced-cost services.
• Put copies of legal documents and other important papers in one place. If papers are in a safe deposit box at a bank, keep copies in a file at home.
• Check documents regularly to see if there is anything new to add or update.
• Find out what specific institutions, such as care facilities, need to have on file.
• Tell trusted family members or friends where important papers are. If there is no one to designate, seek a lawyer (or legal services organization) for help.

For personalized dementia support, call us at 858.492.4400 to speak with one of our Dementia Care Coaches who are here to help San Diego County residents and/or those caring for someone living in San Diego County (Spanish speakers available). Also check out our free education classes, social activities, caregiver support groups, & more.