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Many people are unprepared to deal with the legal and financial consequences of a serious illness such as Alzheimer’s disease or a related dementia. Legal and medical experts encourage people recently diagnosed with a serious illness — particularly one that is expected to cause declining mental and physical health — to examine and update their financial and health care arrangements as soon as possible. Basic legal and financial documents, such as a will, a living trust, and advance directives, are available to ensure that the person’s late-stage or end-of-life health care and financial decisions are carried out.

A complication of diseases such as Alzheimer’s and related dementias is that the person may lack or gradually lose the ability to think clearly. This change affects his or her ability to make decisions and participate in legal and financial planning.

People with early-stage Alzheimer’s or a related dementia can often understand many aspects and consequences of legal decision-making. However, legal and medical experts say that many forms of planning can help the person and his or her family address current issues and plan for next steps, even if the person is diagnosed with later-stage dementia.

There are good reasons to retain a lawyer when preparing advance planning documents. For example, a lawyer can help interpret different state laws and suggest ways to ensure that the person’s and family’s wishes are carried out. It’s important to understand that laws vary by state, and changes in a person’s situation — for example, a divorce, relocation, or death in the family — can influence how documents are prepared and maintained. Life changes may also mean a document needs to be revised to remain valid.

Advance Health Care Directives for People with Dementia

Advance directives for health care are documents that communicate a person’s health care wishes. Advance directives go into effect after the person no longer can make decisions on their own. In most cases, these documents must be prepared while the person is legally able to execute them. Health care directives may include the following:

  • A durable power of attorney for health care designates a person, sometimes called an agent or proxy, to make health care decisions when the person with dementia can no longer do so.
  • A living will records a person’s wishes for medical treatment near the end of life or if the person is permanently unconscious and cannot make decisions about emergency treatment.
  • A do not resuscitate order, or DNR, instructs health care professionals not to perform cardiopulmonary resuscitation (CPR) if a person’s heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a person’s medical chart.

Get Permission for Caregiver Communication in Advance

Get permission in advance from the person with dementia to have his or her doctor and lawyer talk with a caregiver as needed. Advance permission can also be provided to others, such as Medicare or a credit card company, bank, or financial advisor. This can help with questions about care, a bill, or a health insurance claim. Without consent, the caregiver may not be able to get needed information.

Advance Planning Advice for People with Dementia

  • Start discussions early. The rate of decline differs for each person with dementia, and his or her ability to be involved in planning will decline over time. People in the early stages of the disease may be able to understand the issues, but they may also be defensive, frustrated, and/or emotionally unable to deal with difficult questions. The person may even be in denial or not ready to face their diagnosis. This is normal. Be patient and seek outside help from a lawyer or geriatric care manager if needed. Remember that not all people are diagnosed at an early stage. Decision-making may already be difficult by the time the person with dementia is diagnosed.
  • Gather important papers. When an emergency arises or when the person with dementia can no longer manage their own affairs, family members or a proxy will need access to important papers, such as a living will or financial documents. To make sure the wishes of the person with dementia are followed, put important papers in a secure place and provide copies to family members or another trusted person. A lawyer can keep a set of the papers as well.
  • Review plans over time. Changes in personal situations — such as a divorce, relocation, or death in the family — and in state laws can affect how legal documents are prepared and maintained. Review plans regularly, and update documents as needed.
  • Reduce anxiety about funeral and burial arrangements. Advance planning for the funeral and burial can provide a sense of peace and reduce anxiety for both the person with dementia as well as his or her family.

The uncertainty of a dementia diagnosis can be difficult for families to deal with as the disease progresses. By following these basic guidelines, families can be proactive in their planning and bring peace to their current situation.  As the President & CEO of

Amada Senior Care, I have helped countless families ensure that their affairs are in order and the appropriate steps are taken to ensure comfort and confidence.  If you have any questions, or desire a complimentary consultation, please feel free to reach out directly to me at 615-933-7494.  Amada Senior Care is here to help!  May God Bless you and your family.

 Kevin B. Fehr, CSA, CDP, President & CEO, Certified Dementia Practitioner, Amada Senior Care Nashville,. –

America’s trusted resource for caregiving and long-term care insurance claims advocacy.

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