Stress Management for Alzheimer's Disease Caregivers
Norman Relkin, MD, PhD and Della Rios, RNS
Why is the caregiving role so difficult?
Della Rios, RN: Alzheimer's is a long illness. The person starts out with mild symptoms and over the course of the illness the person will eventually become totally dependent on the caregiver for everything. So, of course, for the caregiver, it's an enormously draining experience, emotionally, physically and financially.Is there usually a single caregiver through the whole process?
Della Rios, RN: Most often it's one caregiver with, hopefully, the support of family and friends and organizations like the Alzheimer's Association, and their loved one's physicians.
Is there any way to prepare for the role of caregiver?
Norman Relkin, MD: Most people who come to the job of being a caregiver are forced into it. No one asks to take on this role. Many people do it very, very willingly. They're paying back their parents for what they did for them for many, many years. But no one is truly prepared for it. And, as a consequence, there's a learning curve and a certain amount of stress to be expected in every case.
What are the symptoms of caregiver stress?
Della Rios, RN: Some of the symptoms are sleeplessness, anxiety, depression, anger, and loss of appetite. There are a number of telltale signs. And the trick, of course, is to figure out what the cause of all of that anxiety is, and to try and address it.
Are there unique problems associated with spouses becoming caregivers?
Della Rios, RN: Oftentimes elderly spouses are ill themselves, and this is often very
difficult.
Norman Relkin, MD: There are situations in which not only is the
caregiving spouse physically ill, but in some cases, the stress of caregiving brings
out in the spouse an incipient dementia of their own. This is so common a disorder
that it's not unusual to see two spouses ultimately affected, and then one gets into
the difficult situation of providing medication for another, when they themselves are
forgetful.
What are some of the easiest things that can be done to ease caregiver stress?
Norman Relkin, MD: First identifying the problem, and making an assessment of
what resources are available in that particular family's case. It's a matter of
mobilizing resources, assessing financial resources to plan for the future, and
bringing to bear whatever is needed for that particular person's welfare. It's an
assessment that involves a lot of people, like geriatric case managers, physicians,
allied health professionals, and nurses.
Della Rios, RN: There are elder law attorneys who can
help prepare the caregiver and the person with the illness by doing a durable power of
attorney. One of the first things that the affected person is going to lose, most
likely, is the ability to handle their finances. Thus someone whom they trust needs to
be empowered to do that for them. Also, appointing a healthcare proxy is very
important. If you know, as a caregiver, what your loved one wants down the road, then
the doctor won't be forced to mediate between family members, none of whom are sure
what the person would have wanted.
What about some practical techniques for the caregiver? How does the caregiver address his or her own stress?
Norman Relkin, MD: I think one of the most important stress management techniques is
respite, meaning giving the caregiver an opportunity to rest and pursue their own
needs, while still knowing that their loved one is being cared for. Respite can take
the form of a friend or neighbor looking after the affected individual. Or there are
programs in many places that provide a few hours of time for the caregiver to go
shopping or do other things that can restore a sense of normalcy.
DELLA RIOS,
RN: And if someone has a medical problem in addition to the Alzheimer's, there are
full-day programs where the person can go and participate socially with others, and
have the medical resources there to see to their needs.
How does the Alzheimer's Association fit into this?
Della Rios, RN: The Alzheimer's Association is a source of referral for people. We have information, I believe, on every aspect of the disease and the care. One of the ways you gain power and diminish your anxiety over this illness is to have knowledge. If you call the Alzheimer's Association, we have a 24-hour a day, seven day a week health line, and we'll answer anything. Maybe you just need to talk and it's 2 a.m. and you can't get the person to sleep, and you're exhausted and you just want somebody to talk to.
Call us.
Or, you may want to know how you can get some ongoing rest: Call us.
We'll tell you what daycare programs are in your area and how to access them. You can
reach the Alzheimer's Association by calling 212-983-0700. Finding a support group is
probably one of the single most important things that a caregiver can do for
themselves. It's a place to feel understood. This is not a very normative experience
that you're going through as a caregiver. It's a great place for other information.
Someone will say: Oh, I use Dr. So-and-so, or: I have this great daycare program. It's
very helpful.