Planning for the future after a Dementia diagnosis

A person filling out a form titled Advance Health Care Directive and a pen. Notes: Very shallow focus on the word ‘Health”. Form created for photo using text in public domain.

If you or a loved one has been diagnosed with Alzheimer’s disease or a related dementia, it may be difficult to think beyond the day to day. However, taking steps now can help prepare for a smoother tomorrow.

Over time, the symptoms of Alzheimer’s and related dementias will make it difficult to think clearly. Planning as early as possible enables you to make decisions and communicate those decisions to the right people.

Advance directives are legal documents that outline your preferences and apply only if you are unable to make decisions. For health care planning, they communicate a person’s wishes ahead of time. Doctors and other providers follow these directives for your medical treatment. There are two main documents that are part of an advance directive:

A living will lets doctors know how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about emergency treatment.

A durable power of attorney for health care names someone as a “proxy” to make medical decisions for you when you are not able.

If advance directives are not in place and a patient can no longer speak for him or herself, someone else will need to make medical decisions on their behalf. Talk to your family, friends, and health care providers about what types of care you would want. It can also be helpful to talk with your doctor about common problems associated with your condition.

Advance directives for financial planning are documents that communicate the financial wishes of a person. These must be created while the person still has the legal capacity to make decisions. Three common documents are included in a financial directive:

A will specifies how a person’s estate — property, money, and other financial assets — will be distributed and managed when they die. It may also address care for minors, gifts, and end-of-life arrangements, such as funeral and burial.

A durable power of attorney for finances names someone who will make financial decisions for you when you are not able.

A living trust names and instructs someone, called the trustee, to hold and distribute property and funds on your behalf when you are no longer able to manage your affairs.

Lawyers can help prepare these documents with you and your family members. A listing of lawyers in your area can be found on the internet, at your local library, through a local bar association, or by contacting the National Academy of Elder Law Attorneys.

As symptoms progress, long-term care may be needed. People diagnosed with Alzheimer’s or a related dementia and their family members should begin planning for the possibility of long-term care as soon as possible. Geriatric care managers, often nurses or social workers, can work with you to create a long-term care plan.

Start discussions early with your family members.

Put important papers in one place and make sure a trusted person knows where.

Update documents as situations change.

Make copies of health care directives to be placed in all medical files.

Give the doctor or lawyer advance permission to talk directly with a caregiver if needed.

Planning now will help you and your loved ones later when symptoms of Alzheimer’s or a related dementia worsen.

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