Caring for someone with frontotemporal dementia: The End

Caring for someone with frontotemporal dementia (FTD) is not an endless task. Not only will the end come but it will come sooner than for people with Alzheimer’s disease and other types of dementia. As a caregiver it is your responsibility to discuss end-of-life plans with your loved one – and the earlier you do so, the better. Legal, financial, and medical planning will ensure that the person with FTD will be able to state their wishes while they still the clarity of mind make informed decisions, and then have those wishes honored when they can no longer speak for themselves.

Frontotemporal dementia: Planning for the end


Living will/advance directive

Allows the person with FTD to appoint a person – known as a health care representative or attorney-in-fact – to direct their medical care when they are no longer able to do so themselves. This advocate may or may not be the caregiver; either way, it should be someone who will see to it that the patient’s wishes are followed through with to the letter. 

Healthcare declaration

A written statement explaining the type of care your loved one wants so that everything goes to their liking even when they can’t express themselves anymore. It addresses specific issues such as the use of artificial life support, mechanical ventilators, cardiopulmonary resuscitation (CPR), feeding tubes, pain medication and more.

Durable power of attorney (DPOA) for healthcare

A four-page document that can be drawn up without an attorney and which grants someone of the patient’s choosing the power the make healthcare decisions on behalf of the patient, including treatment, selection of health care providers, institutional or home care, organ/body donation, etc. Once again, this person may or may not be the primary caregiver. You can find DPOA forms in many hospitals, office supplies stores, and on the Internet.


·         The National Academy of Elder Law Attorneys and the American Bar Association

·         Elder Law Attorney Checklist

·         Nolo

·         Compassion and Choices

·         State legal aid offices

·         The state bar association

·         Social service agencies

·         10 Things to Consider Including in a Will

·         ElderLawAnswers


Durable power of attorney (DPOA) for finance

Similar to a DPOA for healthcare, this document grants an individual the power to make financial decisions on the FTD patient’s behalf.

Living trust

Basically a trust created in life rather than after death, in which a ‘trustee’ holds legal title to property and funds for a ‘beneficiary.’ The trustee and the beneficiary may be the same person who would keep control of all property held in trust, but that would sort of defeat the purpose when that person suffers from dementia.


A legal document in which an executor manages the patient’s state so that the patient’s property is distributed according to his or her wishes among his or her beneficiaries – ergo, the persons who will receive the state after the patient passes away.


·         Having joint signatures on all financial accounts.

·         Talking about future financial affairs with an adviser.    

·         Arranging how and when the person with FTD will access his or her finances.    

·         Making a financial power of attorney.    

·         Naming beneficiaries on all banking, investment and retirement accounts.    

·         Arranging for payment of long-term healthcare.    

·         Preserving the family assets.   

·         Addressing the distribution of the person’s assets after his or her death.



Questions you can ask your relative with FTD

·         Do you want to be placed on a respirator if you have difficulty breathing?

·         Do you wish to be treated for infection or pneumonia – should those conditions occur – or simply receive comfort care?

·         Do you wish to have a feeding tube inserted into your stomach or receive nutrition intravenously if you have problems swallowing?

·         Do you wish to receive CPR if your heart stops beating?

·         Would you like to donate your organs or body for transplant patients or research?


It allows studying the effects of FTD on the brain. It does not delay or hinder funeral, cremation, or burial arrangements. Removing the brain does not prevent embalming or having an open casket either.


General end-of-life resources

·         American Bar Association

·         California Coalition for Compassionate Care

·         Caring Connections

·         End-of-Life Decision-Making

·         End of Life Issues

·         Legal and Financial articles

·         Legal Issues in Planning for Incapacity

·         National Academy of Elder Law Attorneys

·         Nolo

·         List of estate planning attorneys, financial planners and CPA planners

·         Talking about Your Final Wishes

·         AARP

·         Growth House

·         HospiceNet

·         Your Life, Your Choices

·         Caring Conversations

·         Five Wishes

Related: Caring for someone with frontotemporal dementia: Pro care