Dementia Directives

What if you were to develop dementia? What kind of medical care would you want?

About Dementia

There is no known cure for dementia. People with dementia eventually are unable to recognize people they know, in time they may need help from others to care for themselves, and gradually they can lose the ability to speak, eat, and walk. While people do eventually die from dementia, the average time for dementia to progress to a severe form takes about 8 years, but it can vary considerably.

The Challenges

These disorders are caused by abnormal brain changes that can result in the following symptoms even in the early or middle stages:

  • Problems with short-term memory
  • Difficulty remembering appointments
  • Inability to keep track of wallet, purse or keys
  • Not being able to pay bills
  • Inability to plan and prepare meals
  • Wandering out of the neighborhood and getting lost

“Dementia is not a single disease,” according to The Alzheimer’s Association, “it’s an overall term – like heart disease – that covers a wide range of specific medical conditions.”  

Planning for your Future

Your guidance today will help the people taking care of you in the future.

If you were to develop worsening dementia, one of the most important things you can do is tell people who would be taking care of you what you would want for medical care. As dementia advances, you will lose the ability to make decisions. Others – family, friends, healthcare providers or a surrogate decision-maker – will need to make decisions for you.

Dementia Directives – also known as a Living Will for Dementia – are now available.  These tools enable you to communicate your wishes for care and treatment and offers some peace of mind for those who may be carrying out your wishes to be sure that the decisions they make are aligned with what you would have wanted.

Dementia Directives describe the various stages of dementia and under each stage, provides options for you to indicate which medical interventions you would want at that stage. The form is free to download (see below).

There is even a specific Advance Directive for Dementia that provides clear language for your care regarding receiving food and liquids. Created by End of Life Choices New York, the new directives provide an opportunity for patients to make their wishes about assisted feeding known to family members and clinicians in advance should they develop significant cognitive impairment in the future.

Consider your values and your options.

As you think and plan for your future with a dementia diagnosis, consider your values and your options.  The resources below can help you sort out what is important to you and help you communicate those wishes to others.

In a post in The Good Death Society blog, Californian Susan Robinson, a retired clinician, talks about why medical aid in dying is not an option for those diagnosed with dementia. Although she writes about the California law, mental competency is also an eligibility requirement of New Mexico’s Elizabeth Whitefield End of Life Options Act.  Dr. Robinson discusses the challenges of both living and dying with dementia and provides her perspective on an option she considers to be a preferable death for her.

Take the time, now.

Take the time to complete the Dementia Directive now. Attach it to your Advance Directive. Share with you loved ones or surrogate decision-maker. You’ll feel better that you’ve taken this step to make your wishes known and to help your loved ones if they face difficult decisions on your behalf.

Documents for Download:

PDF For download. 6 pgs.

Dementia or Living Will Directives

What if I had Dementia? Planning for the Future

Alzheimer’s disease is one of the most common problems people face in their 70’s and 80’s. One of the most important things you can do is tell people who would be taking care of you what medical care you think you would want if you were to develop worsening dementia.
Updated February, 2024

Supplemental Advance
Directive for Dementia Care

“This Supplemental Advance Directive for Dementia Care should be applied when my dementia has progressed to the point at which, in the opinion of my health care agent, I have reached advanced late-stage dementia defined as Stage 6 or 7 on the Functional Assessment Staging Test (FAST). I will call this “My Chosen End Point.” I would wish to die quickly and peacefully under those circumstances.”

PDF For download.

Functional Assessment Staging Test (FAST) Table

FAST is a seven-stage system based on one’s level of functioning and ability to perform activities of daily living (ADLs).
Stage Patient Condition Level of Functional Decline Expected Duration of Stage
Stage One
Normal Adult
No functional decline.
Stage Two
Normal older adult
Personal awareness of some functional decline.
Stage Three
Early Alzheimer’s disease
Noticeable deficits in demanding job situations.
The average duration of this stage is 7 years.
Stage Four
Mild Alzheimer’s
Requires assistance in complicated tasks such as handling finances, traveling, planning parties, etc.
The average duration of this stage is 2 years.
Stage Five
Moderate Alzheimer’s
Requires assistance in choosing proper clothing.
The average duration of this stage is 1.5 years.
Stage Six
Moderately severe Alzheimer’s
Requires assistance with dressing, bathing, and toileting. Experiences urinary and fecal incontinence.
The average duration of this stage is 3.5 months to 9.5 months.
Stage Seven
Severe Alzheimer’s
Speech ability declines to about a half-dozen intelligible words. Progressive loss of ability to walk, to sit up, to smile, and to hold head up.
The average duration of this stage is 1 year to 1.5 years.

Other Organizations:

Dementia Values Tool
Diagnosis Decoder for Dementia

Dementia Values & Priorities Tool

Provide Clear Care Instructions to Your Loved Ones

C & C’s Dementia Values & Priorities Tool will help you identify your personal values and care wishes so that you stay in control.  Your clear care instructions will take the burden off your surrogate healthcare decision maker to make difficult decisions, when you can no longer make those decisions for yourself

Prepare for a Dementia Appointment

Create a List of Questions to Help You Get the Information You Need from Your Healthcare Providers

C & C’s Diagnosis Decoder for Dementia helps you generate specific questions for your doctor, nurse or other professional – questions designed to get you the complete information you deserve.  Because no one knows more about you – and what you want – than you.

Advance Directive: A Directive for Receiving Oral Foods and Fluids in Dementia

End of Life Choices New York, in collaboration with attorneys, palliative care clinicians and others, has developed an advance directive specifically designed for those with an early stage of Alzheimer’s or another dementing disease, or for those with a significant family history of dementia and fears of developing such a disease in the near future.