advance healthcare directive for dementia

Advance Healthcare Directive for Dementia

Creating an advanced healthcare directive for dementia is an essential step in ensuring that your loved one’s wishes are respected and followed, especially as their ability to make decisions diminishes. A dementia directive is a specialized form of an advance directive tailored specifically for people who have been diagnosed with dementia. This directive is important when guiding family members and healthcare providers to make informed decisions aligned with the patient’s preferences and values. Given the progressive nature of dementia, establish these directives early, while your loved one still retains the capacity to understand and articulate their wishes.

Your Guide to an Advance Healthcare Directive for Dementia

Can someone with dementia complete an advance directive?

If your loved one with dementia is capable of understanding the implications and consequences of their decisions, they may be able to complete an advance directive. This is more feasible in the early stages of dementia when they still have the mental capacity to engage in meaningful decision-making and the implications of these decisions. If there’s uncertainty about their mental capacity, a medical evaluation is recommended. Since laws regarding advance directives differ by state, legal consultation and awareness of local guidelines are essential.

Why does your elderly loved one need a dementia directive?

It’s important for several reasons:

Early Decision-Making: In the early stages of dementia, your loved one can still make informed decisions about their future care. A dementia directive allows them to express their wishes regarding treatment, care, and end-of-life decisions while they are still able to make these decisions clearly.

Personal Autonomy: It helps preserve your loved one’s  autonomy. By outlining their preferences for future care and medical interventions, they have a say in their treatment even after they lose the ability to communicate their wishes.

Specifics of Dementia Care: Dementia progresses differently than other illnesses. A dementia directive can address specific scenarios that might arise at various stages of the disease, which might not be covered in a standard advance directive.

Reduces Family Burden: It can ease the emotional and decision-making burden on family members. When a person’s wishes are clearly documented, it relieves family members from having to make difficult decisions on their own Sometimes members of the. family are in denial about dementia and either are not physically present and don’t know what is happening or want to pretend their loved one will live forever. But their loved one needs proper care when they have dementia and can’t make decisions for themselves. This is when it’s important to have the advanced directive for dementia already in place. 

Communication with Healthcare Providers: It ensures that healthcare providers are aware of the individual’s preferences. This is important when guiding treatment decisions and end-of-life care.

Legal Protection: It provides a legal framework that supports and validates the person’s wishes, which can be important if there are disagreements or uncertainties about their care.

Creating a dementia directive should be done after thorough discussion with healthcare professionals, legal advisors, and family members, to ensure that it accurately reflects your loved one’s wishes and complies with local laws.

How is an advanced healthcare directive for dementia developed?

Developing an advanced healthcare directive for dementia includes: 

  • Understanding: Learn about dementia’s progression and implications for future decision-making.
  • Professional Advice: Consult healthcare professionals and legal experts specializing in elder law.
  • Family Discussions: Talk with your family and potential caregivers about your care preferences.
  • Document Preferences: Clearly state your care wishes for different dementia stages.
  • Healthcare Proxy: Choose a trusted person to make decisions when you’re unable to.
  • Regular Updates: Periodically review and update the directive as needed.
  • Distribution: Share the directive with your proxy, family, and healthcare providers.

When is the best time to fill out a dementia directive?

The ideal time to complete a dementia directive is as early as possible, preferably after a dementia diagnosis or before cognitive impairment becomes apparent. This ensures the individual’s understanding and decision-making capacity in outlining their care preferences, providing clarity and peace of mind for both them and their family. Regular reviews of the directive are recommended as circumstances change.

What to do when there is no advance directive for dementia

When there is no advance directive for dementia, and the person with dementia is no longer able to make informed decisions, here are several steps you can take:

Consult Healthcare Providers: Talk to the healthcare team for guidance on medical decisions based on the patient’s current condition.

Family Decision-Making: Family members should collaborate on decisions, considering what their loved one might have wanted.

Legal Appointments: If there’s no designated decision-maker and disagreements arise, consider appointing a legal guardian or conservator through the courts.

Consider Past Wishes: Use any known preferences or values of the person to guide decisions, even if they weren’t formally documented.

Ethical Consultation: Seek advice from hospital ethics committees or consultants in complex cases without an advance directive.

Counseling and Support: Emotional support from counselors, support groups, or religious advisors can be helpful.

Document Decisions: Keep a record of decisions made and their rationales for future reference.

Future Planning: Consider establishing legal documents like power of attorney or a living will for future decision-making.

The goal is to respect the dignity and wishes of the person with dementia as much as possible, even in the absence of a formal advance directive.

Is a dementia directive the same as other advance directives?

A dementia directive is a specific type of advance directive, but it is not the same as other general advance directives. Here are the differences:

Specificity for Dementia: A dementia directive is created specifically for the progression of dementia, which may not be adequately covered in a standard advance directive. It includes detailed preferences for care at different stages of dementia.

General Advance Directives: General advance directives include documents like a living will and a healthcare power of attorney. A living will outlines a person’s wishes for medical treatment in situations where they cannot communicate, while a healthcare power of attorney appoints someone to make medical decisions on their behalf.

Scope of Decision-Making: General advance directives address a range of health scenarios, including terminal illness, permanent unconsciousness, or other conditions where the person can’t make decisions. Dementia directives are focused specifically on unique aspects of dementia, like gradual loss of cognitive abilities and decision-making capacity.

Stages of Dementia: Dementia directives may include specific instructions for different stages of dementia, addressing issues like living arrangements, types of medical intervention, and end-of-life care preferences as dementia progresses.

While a dementia directive is a type of advance directive, it is more specialized, addressing the specific needs and considerations associated with dementia. People suffering from dementia should have both a general advance directive and a separate dementia directive to ensure comprehensive coverage of their wishes.

Guardianship, conservatorship, and power of attorney: Guardianship, conservatorship, and power of attorney are legal tools for decision-making assistance. Guardianship vs conservatorship vs power of attorney for the elderly all have distinct features :


  • Focus: Personal decisions like healthcare and living arrangements.
  • Scope: Can be broad or limited.
  • Establishment: Through a court process assessing the individual’s capacity.



  • Focus: Financial affairs management.
  • Scope: Specifically financial decisions.
  • Establishment: Court-appointed, similar to guardianship.


Power of Attorney (POA):

  • Focus: Varies; can include health, financial, or general decisions.
  • Scope: Can be general or specific.
  • Establishment: Legal document signed without court involvement.



  • Court Involvement: Required for guardianship and conservatorship; not for POA.
  • Initiation: Guardianship and conservatorship post-incapacity; POA typically pre-incapacity.
  • Authority Oversight: Guardians and conservators are court-monitored; agents under POA are not but have fiduciary responsibilities.


Does an advance healthcare directive for dementia need to be signed in front of a notary?

Requirements for executing an advance directive vary by state. Some states require the document to be notarized, while others may only require witness signatures. Check the specific legal requirements in your state. Have these documents notarized regardless, as it provides legal verification and helps ensure the directive is recognized and . respected by healthcare providers and institutions. Consult with a legal professional familiar with elder law or healthcare directives to ensure the documents are properly executed and legally binding.

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