First Steps after a Dementia Diagnosis

Hurley Elder Care Law offices are based in Atlanta. In the August 2007 issue of their publication “The Elder Issue,” they offer some guidelines for families to follow once a family member has been diagnosed with Alzheimer’s or any dementia type.

Some of the steps families should follow include:

* Organize a family meeting
* Assess your loved one’s abilities
* Learn about Alzheimer’s disease
* Find a good healthcare provider
* Make long term plans
* Create a support network
* Investigate resources for local support

Here’s a copy of the law firm’s advice. Just replace “Alzheimer’s Disease” with whatever disorder of interest to you as I think the guidelines apply to us all.



Family Caregivers’ Guide to First Steps after a Diagnosis of Alzheimer’s Disease
Hurley Elder Care Law
The Elder Issue
August 2007

Family situations vary tremendously. Sometimes all adult children and the spouse of the person with AD are in agreement as to the next steps to take, but possibilities for family disagreements are many. The cooperation of the person with AD is very important. Sometimes the person with AD is willing to stop driving, sign all of the important legal documents, and accept the care that he or she may need. But often there is resistance to making changes by the person with dementia.

There are concrete steps that family members can take to make the journey smoother. Some of the steps that you can take as a family member of the person with dementia are:

FAMILY MEETING: Arrange for a regular family meeting to discuss all of the issues related to the diagnosis. Discuss the diagnosis with everyone in the family including family members in other cities or states. Talk about what needs to be done now and in the future. Although the responsibilities of various family members will differ, everyone needs to know what is happening. It is a good idea to have one person who will speak for the family on issues related to health care and the same person or a different person who will speak for the family on financial issues. After the family decides the correct person for each responsibility, formal power of attorney forms can be signed. For example, some family members may live in the same city as the person with dementia. It would make logical sense to designate one of those family members with power of attorney for health care since they can go to the doctor’s office with the person with dementia.

FAMILY MEMBER WITH AD: Make a realistic assessment of the abilities of the person with the disease. The family members cannot rely solely on what the person says she or he can do. These actions must be observed first hand. The idea is to give the person with the disease as much as they can reasonably do for themselves, while not making unrealistic demands. Driving, making financial decisions, staying alone, and using the kitchen safely are all examples of issues that need to be examined on a regular basis. As an example, a person with dementia may think that it is still safe to drive the car alone even though she or he may have gotten lost recently.

LEARNING ABOUT AD: Learn all that you can about the disease. Read books, search the Internet, talk with other family caregivers like yourself, and talk to knowledgeable health care providers. One good place to start is the Alzheimer’s Association at and 1-800-272-3900. A very useful book is “The 36 Hour Day: A Family Guide for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Late Life” by Nancy Mace & Peter Rabins.

MEDICAL CARE: Find a health care provider with whom you can work. It may be the physician who diagnosed the disease, or it could be a research physician at Wesley Woods of Emory University or another research program. The person you work with should understand the progression of the disease and know the latest information on medications to treat the symptoms. It is very important that someone goes to each physician appointment with the individual suffering from Alzheimer’s disease in order to better understand the disease and the treatment. This is actually true for most people since they cannot remember everything that the doctor told them five minutes later, regardless of whether they have memory impairment or not.

LIFE CARE PLANNING. Make certain that the necessary legal and financial plans are in place. The most important thing that people should consider is how to find, get and pay for good long term care. This includes the need for an evaluation of the assets available, who needs to have access to those assets and what are the alternative means of financing long term care. From the legal document perspective, a review of or putting into place a Durable Power of Attorney, Health Care Power of Attorney and a Will and/or Trust is very important while the individual still has sufficient capacity to make such decisions.

EMOTIONAL SUPPORT: Set up a support system for yourself. Who in your family or among your circle of friends would be the most supportive of you and your family? Work with them in finding the help you need. You may just need to have someone listen to you and provide some relief from care giving. You may want to join a support group sponsored by the Alzheimer’s Association to work through the feelings that you have and to get ideas about how to best care for your family member with AD. Remember that if you burn out as a caregiver, you are no good to anyone, including yourself.

SAFE RETURN: At a minimum, register the person with Alzheimer’s disease in Safe Return. This is a program of the Alzheimer’s Association that consists of a national registry and an identification bracelet. The cost for Safe Return is $40.00 for the first year and $20 for each year your relative is in the program. With changing technology, there are more and more options available for people to locate a lost or wandering loved one.

RESOURCES TO HELP: Find out about services available in Georgia to assist a person with Alzheimer’s disease. Develop a list of places to contact including adult day, home care agencies, and long term care facilities. Know the services available in your community so you can access these organizations and services as you need them.

CAREGIVER SUPPORT: Take care of yourself. You need to think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops or progresses quickly. Learn to recognize your stress risks and find ways to relieve them. Accept help. Your life and the life of the person with the disease depend upon you caring for yourself.

DIFFICULT SITUATIONS: Difficult situations can easily develop related to family members with Alzheimer’s disease. One example is when the spouse or adult children will not take the keys away from the person with AD, nor will they admit that there are safety issues involved because they themselves are in denial. People in certain stages of the disease cannot make rational decisions. Remember that and take action to protect not only your family member, but the public at large. Another frequently occurring situation happens when one spouse has Alzheimer’s disease and the other spouse has physical health problems. In this circumstance, the husband and wife need different kinds of care and may not be able to stay in their home indefinitely. It pays to be prepared for this eventuality.

HELPING CHILDREN AND TEENS. If you are an adult daughter or son caring for a parent with Alzheimer’s disease, it is likely that you have young children or teenagers still living in the home. Children often experience a wide range of emotions when a parent or grandparent has AD. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” It is important to find out what the emotional needs of your children are and try to meet them.

The diagnosis of Alzheimer’s disease or any related dementia can be very threatening news, but when a spouse and/or adult children are willing to deal with the illness in a systematic manner, family conflicts can be minimized and the quality of life of the person with the disease can be maximized. The most important thing to do is to take action and take action quickly. The sooner that action is taken, the more options there are available.