Which professionals handle dementia?
Learning that your parent has been diagnosed with Alzheimer's is unsettling at best, but fortunately many experienced professionals deal with the disease every day and can provide you with information and guidance. For your parent, specialists can provide issue-specific advice and care for a whole range of health and lifestyle matters. For you, these experts have seen it all and know troves of resources that will make you feel less alone and better equipped for the challenges ahead.
Eight important professionals to have on your team:
A primary care physician
A trusted, experienced primary care physician (a "generalist," either an internist or family doctor) can monitor and treat a variety of health needs and also refer your parent to any necessary specialists, whatever health issues arise. This primary doctor should be relatively easy to reach, informed about Alzheimer's, and approachable -- he shouldn't mind answering lots of questions from concerned adult children.
Your parent's longtime doctor can be especially valuable in this role, as he can help judge the changes she undergoes. If her regular family physician doesn't have much experience with Alzheimer's disease, however, or doesn't seem to satisfactorily attend to her Alzheimer's-related needs, consider transferring to a new doctor.
A physician specialist
Look for any of the following doctors who specialize in an area related to Alzheimer's and have extensive knowledge and experience in treating patients with this disease:
A geriatrician (specialist in geriatrics, or aging)
A physician who gives comprehensive medical care (training in family medicine or internal medicine) but specializes in patients over 50
A neurologist (physician who specializes in disorders of the nervous system; there is also a subspecialty of geriatric neurology)
A psychiatrist (a physician who specializes in mental illness; there is also a subspecialty of geriatric psychiatry).
It can be useful to consult multiple specialists, depending on your parent's needs and the specialists' expertise. As a starting place, ask your parent's primary care doctor for referrals.
Alzheimer's Help: Psychological and Practical
A psychologist or neuropsychologist
A psychologist, especially one experienced in working with people with Alzheimer's, can help explain how the disease may affect the person's mood, personality, and behavior -- valuable considering that this is a disease of the mind. A neuropsychologist is a specialist who can describe how the condition of the brain (and the rest of the nervous system) relates to changes in memory, communication, personality, and behavior that result from the disease. Both a psychologist and a neuropsychologist can suggest ways to manage psychological or behavioral issues that arise as the disease progresses.
A geriatric clinical social worker, geriatric care manager or coordinator, or geriatric care consultant
This professional, who is often a social worker or nurse with special training and experience in geriatrics, can be a "secret weapon" of help -- secret because despite the profession's prevalence, patients often don't know about it.
This type of professional helps determine and provide individualized care, which may include:
Evaluating your parent's ability to live independently or perform specific tasks;
Assisting in the formation (and subsequent modifications) of a care plan;
Offering information about available services and resources;
Coordinating services, if desired;
Giving advice on care-giving issues; and
Mediating regarding care when family relationships become strained.
It's important that the geriatric care specialist you choose is someone with experience specifically with Alzheimer's care. This allows her to give accurate, comprehensive information about the disease process, symptom management, and treatment -- and you'll likely find that she has particularly insightful suggestions and opinions based on her experience working with other families living with Alzheimer's.
If you or other family members live far away from your parent, you'll find this informed, neutral, and well-connected specialist to be invaluable. For referrals, ask the physicians you're dealing with or your local hospital or aging associations.
A home healthcare nurse or aide
Taking on the responsibility of caring for someone with Alzheimer's can be overwhelming, especially as the disease progresses. It's a good idea to look into hiring an "extra pair of hands" even before you feel you need such help. A home healthcare nurse (sometimes called a visiting nurse) or aide is someone who has been trained to provide basic care to someone in her own home in order to help the person retain as much independence and quality of life as possible. This care may include assisting with simple activities like bathing, dressing, eating, organizing or light housekeeping, moving around, and making particular rooms and areas safer or easier to use.
Depending on the care provider's background, she may also be qualified to administer medications and lead physical therapy sessions. It can be helpful but not essential to find someone with experience caring specifically for Alzheimer's patients.
Others Who Can Help with Alzheimer's Care
An elder law attorney (or an otherwise trusted and qualified attorney)
As the disease progresses, your parent will need more help managing legal and financial affairs. While not absolutely necessary, an elder law attorney is particularly fit to help with decisions regarding such things as durable power of attorney and healthcare proxies, asset management (such as through a living trust), and conservatorship.
A power of attorney is a document that permits someone specifically named (an " attorney-in-fact") to make legal decisions for someone else, even if that person becomes incapacitated mentally or physically. A specific kind of durable power of attorney that is especially relevant to Alzheimer's care (and other medical care) allows the attorney-in-fact to make healthcare decisions for the person when she is no longer able to do so herself; the attorney-in-fact is then also called a healthcare proxy. A legal document granting conservatorship gives someone specifically named (a "curator" or "guardian") the legal right and responsibility to manage the care, finances, and/or personal matters of someone who has lost the mental or physical abilities to do so for herself.
Caregiver emotional supporter(s)
Caregiver stress is likely to be a part of your own future -- especially if you provide primary care -- and is best addressed before it becomes a serious problem. Caregiver risks include depression and burnout, which is why a caregiver team should include at least one person who provides support to the caregiver.
This person could be a professional such as a therapist (social worker, psychologist, psychiatrist) or a friend or family member. The ideal candidate is a good listener who knows you well and is willing and available to provide comfort or counsel when the need arises. Additionally, it's useful to line up key people who could step in and help with simple practical matters, like running an errand or, if it's someone your parent is familiar with, giving her a ride or taking over for you for a couple of hours.
A religious or spiritual guide (or clergy)
Given the emotional and psychological changes in store for both you and your parent, you may find it helpful to confide in someone with a religious or spiritual background. This may be a religious leader, such as a priest, minister, or rabbi, with whom your family is already familiar. Many religious institutions provide Alzheimer's-specific programs. You may prefer a nonprofessional confidante who can lend a kind ear and compassionate, hopeful, and faith-based reassurance.