Living with the Disease

If you or a loved one has received a diagnosis of Alzheimer’s disease or another dementia, you may be feeling overwhelmed. You need time for the diagnosis to sink in and to prepare emotionally, financially, and practically for this progressive and terminal disease.

This is a difficult time, but it’s helpful to know about the condition once a formal diagnosis has been made. Many people with Alzheimer’s feel a sense of relief when the news of their condition is finally out in the open.

You and your family may be better able to prepare yourselves and live much more fully after accepting the terminal nature of the disease. There will be time ahead to continue enjoying life and pleasurable activities, even if it’s in a different way, and to make important plans and decisions with loved ones.

Gathering more information can help relieve your anxiety and stress. Learning, knowing what to expect, and sharing thoughts and information with loved ones, others who have the disease, and professionals can help you feel more in control and better able to take advantage of current treatments and assistance.

Family Caregivers

In most cases, the primary caregiver of someone with Alzheimer’s disease will be a loved one, a spouse, adult child, or close companion. As the disease progresses, caregiving can be extremely demanding. Caregivers need to be flexible and understanding in dealing with changes in their loved one’s behavior and personality. They must also be able to communicate with family, friends and professionals about his or her condition.

As distressing as an Alzheimer’s diagnosis can be, this is the time to begin to accept the future, build a support network, gather information to help alleviate fears and plan for the road ahead. Family members who do not live nearby should support the primary caregiver and try to help with tasks that they can do where they are.

Legal & Financial Planning

Why is it important?

If not already done, legal and financial planning should begin soon after a diagnosis of dementia has been made. People with dementia may be able to manage their own affairs at the beginning. As the disease advances, they will increasingly need to rely on others to act in their best interest.

Future costs for medical and long-term home care are often the greatest concern for caregivers. This section will address some of the resources available in planning for dementia care.

A great way for caregivers to get an introduction to Legal and Financial Planning is to attend and get their questions answered by professionals is to attend our “Advanced Care Planning: Legal & Financial Basics” class held every month. For more information about this class and to RSVP for the next session, please click here.

Important Documents

Health Care Proxy

A properly signed Health Care Proxy gives caregivers the legal authority to make medical decisions. As soon as possible after diagnosis, a person with dementia should consider their wishes for future treatment and designate a Health Care Proxy. Once appointed, a Health Care Proxy can make medical decisions on another person’s behalf, including: choices regarding health care providers, medical treatment, and, in the later stages of the disease, end-of-life decisions. The Health Care Proxy form comes into affect when a physician determines that the person with dementia no longer has the capacity to make medical decisions.

Durable Power of Attorney

This is a legal document that enables an individual with dementia to authorize a trusted person(s) to make legal and financial decisions on his or her behalf. You do not have to appoint a family member although many people do, and you can appoint more than one individual. While there are different types of Powers of Attorney, most people sign a Durable Power of Attorney because it remains in effect after the person with dementia can no longer make financial decisions. A Durable Power of Attorney may help avoid a time-consuming and expensive guardianship proceeding in the future. It is strongly recommended that an attorney draft the Durable Power of Attorney. Forms found in stationary stores may not be sufficient.


Some people are under the misconception that a will takes the place of Power of Attorney and Health Care Proxy. However, this is not the case. The purpose of a will is to designate how a person’s assets will be distributed upon his or her death. It cannot be used to communicate health care preferences or manage a person’s finances while they are alive. Wills are important, and can give an individual peace of mind that his/her wishes will be fulfilled after they die. It is recommended that a will be drafted by an attorney experienced with elder law.