Planning for Dementia FAQs

Dementia is a broad term used to refer to a group of symptoms that may include impaired thinking and memory. The National Institute of Neurological Disorders and Stroke defines dementia as a “word for a group of symptoms caused by disorders that affect the brain. It is not a specific disease. People with dementia may not be able to think well enough to do normal activities, such as getting dressed or eating. They may lose their ability to solve problems or control their emotions. Their personalities may change. They may become agitated or see things that are not there. Dementia is often associated with the natural cognitive decline that occurs with aging. While Alzheimer’s can lead to dementia, conditions other than Alzheimer’s can also be the root cause of dementia, such as Huntington’s Disease, Parkinson’s Disease, and Creutzfeldt-Jakob disease.

According to the Alzheimer’s Foundation of America (AFA), Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, deterioration of thinking and language skills, and behavioral changes. These neurons, which produce the brain chemical, or neurotransmitter, acetylcholine, break connections with other nerve cells and ultimately die. For example, short-term memory fails when Alzheimer’s disease first destroys nerve cells in the hippocampus, and language skills and judgment decline when neurons die in the cerebral cortex.

Unlike many other diseases, experts do not believe Alzheimer’s has a single cause. Instead, they believe the disease is multi-faceted with several factors influencing the development of the disease. The complexity of the disease makes finding a cure, and even effective treatment for those suffering from the disease, more difficult.

• Age. Experts tell us that age is the greatest risk factor for the development of Alzheimer’s disease. The older you are, the higher the risk of developing the disease. One in nine people over the age of 65 have Alzheimer’s disease, and this figure rises to one in three for people over the age of 85.
• Family History. Experts also appear to agree that family plays a role in predicting who will develop Alzheimer’s disease. A family history of Alzheimer’s disease will increase your chance of getting the condition, particularly if it is a brother, sister, mother, or father who had/has the disease. The risk is greater if more than one family member has or has had the disease.
• Researchers have identified certain mutated genes associated with the disease. Anyone who inherits a copy of the APOE-e4 gene is at greater risk, and the risk is even greater if they inherit two copies of the gene. There are also deterministic genes that, if inherited, would guarantee the onset of the disease. This only accounts for around one percent of Alzheimer’s cases and often the patients suffer from early-onset Alzheimer’s.
• Head Injury. We don’t hear much about this one, but there is evidence to suggest that head trauma may lead to Alzheimer’s disease, particularly repeated head trauma.
• Heart Health. The risk of Alzheimer’s disease increases if you suffer from conditions that can affect the heart, such as stroke, high blood pressure, diabetes, and high cholesterol.
• Latinos and African Americans are one and one-half to two times more likely to develop Alzheimer’s than Caucasians. The reason for this is unclear, although many think the higher rate of heart problems in Latinos and African Americans may be the cause.

Some causes of dementia are reversible, but not dementia related to Alzheimer’s. Thyroid conditions or vitamin deficiencies, for example, can cause dementia; however, if they are identified and treated dementia associated with those conditions can be reversed. Unfortunately, Alzheimer’s accounts for about three out of every four cases of dementia.

The best way to plan for the possibility that you will develop Alzheimer’s, or another form of dementia is to incorporate specific tools into your overall estate plan, such as:

• Revocable Living Trust. Creating a revocable trust and naming yourself as the Trustee along with someone of your choosing as the Co-Trustee is a common incapacity planning tool. Major assets are transferred into the trust and managed by you if you can do so. In the event of your incapacity, your Co–Trustee takes over automatically and without the need for any additional legal steps to be taken.
• Healthcare Power of Attorney. This essential planning step allows you to appoint an Agent who will have the legal authority to make healthcare decisions for you if you cannot make them for yourself due to incapacity. A Healthcare Power of Attorney steps into your shoes and can make any decision you might make – unless you choose to limit or guide the Agent’s authority.
• Living Will. A Living Will is an advance directive that lets you make important decisions regarding certain types of medical treatment relating to end of life, recording them as legally enforceable instructions to your healthcare provider, which apply only when certain diagnoses trigger the instructions. In North Carolina, one of those triggering diagnoses can be the conclusion by your physician that you have advanced dementia or some other advanced neurological disease or disability and that you have no possibility of regaining mental capacity.