For 20 years, Robyn Yale has been on a mission to raise awareness of the different needs of people with early-stage Alzheimer's disease (AD). A licensed clinical social worker who practices in the San Francisco Bay Area, Yale says that early stages of AD are different than mid and later stages. Those in early stages of AD are healthy and high functioning, and in many cases able to express feelings, concerns and experiences.
At the beginning of the illness, a person is only having mild memory loss or confusion, she says. Yet it's significant enough to disrupt many aspects of life. People may find it difficult to stay at a job, or do certain things the way they were always able to do. In many other ways, however, they are able to care for themselves, communicate and be social.
According to the Alzheimer's Association, AD is the leading cause of cognitive impairment in old age, affecting one of every 10 adults over 65, and one in four of those 85 and older. Yet traditionally, for people with the disease, their caregivers and families, most programs focus on later stages, when cognitive and physical impairments are pronounced and often agonizing and the person with the disease can no longer discuss his or her condition.
Yale's long crusade has helped catalyze not only awareness but especially a boom in early-stage support groups and education nationwide, primarily through the Alzheimer's Association. We are refuting blanket stereotypes, she says. For years, family members in early stages had to go to existing support groups, where they would hear about all kinds of issues they were not ready to deal with such as wandering, incontinence, nursing home placement. In early stages, they're just beginning to learn how to face the disease and how to adjust family relationships.
Focusing on the special needs of people with early-stage AD has opened a world of possibilities for families. Recognizing that impairment is mild early on, there is less focus on incapacity and more on what people actually can still do. Support groups for both caregivers and care receivers go a long way toward keeping families and functioning intact.
Support groups for people with the disease are just as beneficial as groups for family members, Yale observes. It is actually a very powerful experience: They wind up feeling less alone, getting information and emotional support, and sharing coping strategies.
A lot of things are positive, because people in early stages still have lots of abilities. The challenge is to go on with life. Their attitude becomes, Well, I'm not just going to sit around and wait to die or go to a nursing home.' So they have to figure what can they still do, or start doing, to make life meaningful and possible. It's wonderful to see that happen.
The boom in support groups is partly due to recent advances in medicine: More people are getting diagnosed at an earlier point in the illness. Along with this has been a push to get people into drug studies, Yale says and onto medications that may delay the progression of cognitive impairment.
However, Yale says, these medications don't work for some people, and others don't want to take them. Additionally, physicians and other health professionals may not know or may neglect to tell people that early-stage support groups can be an effective supplemental or alternative type of treatment.
In addition to early-stage support groups, other programs have been developed to support the needs and abilities of people with early-stage AD. These include recreational, social, educational or vocational formats. With growing awareness of the uniqueness of this stage of Alzheimer's disease, Yale says, there are more early-stage programs than there used to be. But they are still far from widely available.
Here are eight steps for coping with a diagnosis of early-stage AD:
Join a group in person or online for education and support.
Help your loved one get his/her legal and financial affairs in order, including a living will and power of attorney for health care and for finances.
If your loved one is still driving but you have concerns, talk with his/her doctor, who can order a regular driving test or a specialized one for people with AD.
If your loved one manages his own medications, count doses to see if proper amounts are being taken. A segmented pill box will help monitor medication taking.
Automate as many functions as you can, such as automatic check deposit and bill paying. But keep your loved one involved.
Consider Meals-on-Wheels if your loved one is living alone and you are concerned about adequate nutrition.
Try to talk to your loved one about long-term care plans, such as who she wants to manage her affairs and health decisions.
Talk to your loved one's physician about clinical trials and discuss what range of early-stage programs are available in your area.
For further resources, call the Alzheimer's Association at 800-272-3900 or visit www.alz.org.