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Planning ahead prevents grief and chaos for patients with younger-onset dementia. Here are the essentials for managing financial matters and medical care for people facing a progressive disease.

Younger-onset dementia affects different patients in different ways. Some people with younger-onset dementia suffer lapses in executive function, the ability to make good decisions, early in the course of the disease, and a few people retain this ability nearly to the end. Some people with younger-onset dementia have problems with memory almost as soon as they are diagnosed, and a few have functional memory throughout the course of their condition. 

Sooner or later, however, anyone who has dementia will need assistance in making and carrying out decisions about financial and medical matters. It is important to allow dementia patients to retain as much control over their lives as possible, while providing a clear plan for decision-making when they can no longer make decisions for themselves.

This article contains information for people who live in countries with legal systems that use English common law, such as the United States, and also Canada, Australia, and other countries in the British Commonwealth. People in countries with different legal systems have the same concerns, but may need to go about preparations for continuing care very differently. This article is not legal advice. Consider it a source of questions to raise with your attorney rather than as a collection of answers for your legal concerns.

Plan now, not later

It is important for people with younger-onset dementia to participate in their own planning process. It is essential for them to sign papers while they are still considered mentally competent to express their wishes. 

Planning for financial decisions

The handling of joint accounts, for example, a bank account owned by both husband and wife, or by both parent and (preferably only one) child, usually does not require any special legal documentation for continuing use after dementia has been diagnosed. Problems arise when an account is held in the name of the person who has dementia in their name only.

The younger-onset dementia patient can grant power of attorney to someone to manage a bank or investment account for them, but only while they are considered to be still mentally competent. When the person who has dementia is not willing to grant this authority to a power of attorney, it may be possible to work with the bank to limit withdrawals so that payments out of the account can be limited and the patient cannot become penniless as the result of a single transaction. Usually this involves a daily spending limit.

  • Joint accounts are easier to manage.
  • It is possible to make arrangements with the bank to limit access to financial assets.
  • A durable (or enduring) power of attorney allows someone the patient trust to manage financial matters.

Writing a will

Everyone, whether they have dementia or not, needs a will. Each spouse has a separate will. The will specifies how assets will be conveyed to heirs after death. There are different rules in different states in the United States and Australia and different provinces in Canada, as well as in different countries. It is always a good idea to seek the help of an attorney (solicitor) in writing a will. This is another task that has to be completed while the patient is mentally competent. A will signed after someone has been found incompetent is invalid.

Only the latest will is valid. Prior wills are ignored. It is important for the executor, the person who will make sure the decedent's wishes are carried out, knows where the will can be found.

Appointing a durable (or enduring) power of attorney

A durable (in the United States) or enduring (in the British Commonwealth) power of attorney is a document that appoints a trusted person to have the same legal authority as its grantor should the grantor become incapacitated. This grant can be special, for a specific purpose, or general, for any action that the grantor could legally perform for themselves. There are varying requirements for the form on which the power of attorney is recorded and there are varying requirements for an apostille or notarized signature verifying that the signer of the document was in fact the person identified on the document. It is not absolutely necessary to consult an attorney before granting a power of attorney, but in almost all cases the signature must be confirmed by a notary public.

Recording an advanced medical directive

If you lose the ability to make decisions about your own medical care, someone needs to make those decisions for you. Depending on where you live, that person is known as a medical power of attorney or a medical guardian. Different governments, even different states, counties and provinces, have different rules about the form of an advanced medical directive and who can serve as the power of attorney or guardian. Because medical decisions often have to be made quickly, often there is a primary guardian and and one or more alternate decision makers in case the primary power of attorney is not available. It is important to make clear who is in charge when family members disagree. They may fight over your care, but the conflict will be worse if you have not clearly specified who is the preferred decision maker.

When this decision is not made in advance, or when the person appointed for this role experiences a conflict of interest, the decision of who serves as guardian may be made by a court. It is best to make this decision early, and deal with any disagreements in the family, long before the document is needed.

Doctors often disregard advanced directives with which they personally disagree. Choose a person of strong character to be your medical power of attorney to make sure your wishes are enforced.

  • Corke C, Mann J. Effect of a supplement clarifying patients' intentions on doctors' willingness to follow the wishes of an agent with medical enduring power of attorney.Crit Care Resusc. 2009 Sep.11(3):215-8. PMID: 19737125.
  • Corke C, Milnes S, Orford N, Henry MJ, Foss C, Porter D. The influence of medical enduring power of attorney and advance directives on decision-making by Australian intensive care doctors. Crit Care Resusc. 2009 Jun.11(2):122-8. PMID: 19485876.
  • Corke CF, Lavery JF, Gibson AM. Choosing life support for suddenly severely ill elderly relatives. Crit Care Resusc. 2005 Jun.7(2):81-6. PMID: 16548797.
  • Photo courtesy of SteadyHealth

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