Dementia affects a person’s ability to think and communicate clearly over time. Although it may feel overwhelming, planning ahead means that a person can make important decisions about their care and communicate those plans to the necessary parties.

After receiving a diagnosis of dementia, a person can work with loved ones, caregivers, healthcare professionals, and legal professionals to create a care plan.

A care plan for someone with dementia can include decisions and legal documents regarding:

  • healthcare
  • financial wishes
  • long-term care
  • end-of-life care
People sitting around a table making a care plan after receiving a diagnosis of dementia.Share on Pinterest
Catherine Falls Commercial/Getty Images

Healthcare planning includes advance directives, which are legal documents that communicate a person’s preferences ahead of time.

If a person is unable to make decisions, healthcare professionals can refer to the directives to ensure they treat a person according to their wishes.

Advance directives for healthcare usually consist of two main documents: a living will and a durable power of attorney for health.

Living will

A living will instructs doctors on how to treat a person if they are no longer able to make decisions.

In a living will, a person can outline which common medical treatments they would consent to, which they would not consent to, and under which conditions these choices would apply.

These can includeTrusted Source decisions like using a ventilator machine and artificial nutrition and hydration, such as feeding tubes. Although these interventions can be lifesaving, a person may decide to prioritize comfort during the later stages of an illness.

A person can work with an attorney to create a living will. They can also download and fill out advance directive forms for their state and have them witnessed or notarized. They may want to provide copies of their living will to their healthcare team and their proxy.

Durable power of attorney for healthcare

In a durable power of attorney for healthcare, a person can name someone as a proxy. A proxy can communicate medical decisions on behalf of someone else if that person is no longer able to.

If dementia has affected a person’s decision-making and communication abilities, a proxy can work with a healthcare team to ensure their treatment goes ahead according to their wishes.

A person can choose any trusted adult of sound mind to act as a proxy. People oftenTrusted Source name a family member, but others may choose a friend, lawyer, or other trusted acquaintance.

A person can work with a lawyer to name a proxy, or download and fill out the advance directives forms for their state and have them witnessed or notarized.

A person should give a copy of the completed durable power of attorney for healthcare to their proxy and ensure their healthcare team and proxy have each other’s information.

Other medical decisions to consider

Advance directives can include instructions on other treatment decisions, such as:

  • Do not intubate (DNI) order: A DNI lets healthcare professionals know that a person does not wish to be intubated or put on a breathing ventilator.
  • Do not resuscitate (DNR) order: A DNR states that a person does not wish for healthcare professionals to resuscitate them with life-support procedures like CPR if their breathing or heart stops.
  • Organ, tissue, and brain donation: A person can outline whether they want their organs or other tissues to be donated after their death.
  • POLST/MOLST: Physician orders for life-sustaining treatment (POLST) and medical orders for life-sustaining treatment (MOLST) are medical orders that let healthcare professionals know a person’s preferences for treatments that sustain or support life during a medical emergency.

Financial planning advance directives are documents that convey a person’s financial wishes. A person must create these documents while they still have the legal and cognitive capacity to make decisions. A person can work with a lawyer to help prepare and finalize these documents.

Financial directives usually include:

  • A will: A will indicates how a person’s estate is to be distributed and managed after their death. It may also specify end-of-life arrangements, such as the funeral, and other considerations, such as the care of minors.
  • A durable power of attorney for finances: A person can name someone to make financial decisions on their behalf once they are no longer able.
  • A living trust: In a living trust, a person can name a trustee to hold and distribute their funds and property on their behalf once they are no longer able to.

A person can work with their loved ones, their healthcare team, and social workers to prepare a long-term care plan.

Planning far in advance means a person with dementia can be part of the decision making about where they will reside for long-term care. They may also be able to set aside finances for their care.

Healthcare professionals or care aides can assist with at-home care. However, people with Alzheimer’s disease, a common cause of dementia, may eventually display behaviors that mean it is unsafe for them to remain at home as they can require constant care. These behaviors may include:

Facilities for people who require full-time care include assisted living facilities, skilled nursing homes, and residential facilities that provide appropriate care.

There is no cure for Alzheimer’s disease and related dementias. End-of-life care can include options like hospice services, which focus on providing comfort and dignity.

When considering end-of-life planning, a person may also want to review and finalize their decisions regarding life-sustaining treatments and other medical directives that can affect quality of life.

They may also want to review and finalize decisions that affect matters after their death, such as financial directives and their preferences for funeral and burial plans.

To begin planning after a diagnosis of dementia, a person may want to:

  • Discuss their wishes, preferences, and plans with their loved ones.
  • Start discussions with an attorney, healthcare professionals, and any other relevant parties.
  • Research care facilities and care options in advance to help with decision making.
  • Gather and organize important documents, and let a trusted person know where they are.
  • Make copies of healthcare directives for their medical files.
  • Make copies of financial directives and ensure their lawyer, trustee, or someone they trust has access to them.
  • Provide permission to doctors and lawyers in advance to communicate directly with caregivers, proxies, and trustees.

The following resources may be helpful for making a care plan for someone with dementia.

Creating an advance care plan after a dementia diagnosis means a person can communicate their healthcare, financial, and end-of-life wishes while they are still able.

A care plan includes advance directives for healthcare, such as a living will and naming a proxy to make medical decisions on someone’s behalf.

It also includes financial directives, such as creating a will and a durable power of attorney for finances. A care plan also specifies a person’s wishes for their long-term care, and end-of-life planning.

A person can seek help in creating a care plan from loved ones, their healthcare team, attorneys, and online resources.