Dementing illnesses require continuing medical attention. The availability of professional services varies. You, the caregiver, will provide much of the coordination of care. However, there are times when you will need the help of professionals.
You will need a physician who will prescribe and adjust medications, answer your questions, and treat other, concurrent illnesses. The physician who provides continuing care will not necessarily be the specialist who provided the initial evaluation of the person. He may be your family doctor, part of a geriatric team, or someone with a special interest in geriatric medicine. This doctor does not have to be a specialist, although he should be able to work with a neurologist or psychiatrist if necessary. The doctor you select for continuing care must:
1. be willing and able to spend the necessary time with you and the impaired person
2. be knowledgeable about dementing illnesses and the special susceptibility of persons with dementia to other diseases, medications, and delirium
3. be easily accessible
4. be able to make referrals to physical therapists, social workers, and other professionals
Not all doctors meet these criteria. Some doctors have large practices and do not have the time to focus on your problems. It is impossible for any one person to keep up with all the advances in medicine, so some doctors may not be skilled in the specialized care of people with dementia. Finally, some doctors are uncomfortable caring for people with chronic, incurable diseases. However, no physician should give you a diagnosis without following through with referrals to professionals who can give you the help and follow-up you need. You may have to talk with more than one doctor before you ﬁnd the one who is right for you. Discuss your needs and expectations honestly with him, and talk over how you can best work with him. Doctors have been trained to keep the patient’s problems conﬁdential. Because of this, some doctors are reluctant to talk to other members of the family or may ask the patient to sign a form. There may be good reasons why you need to know about the patient. Physicians who work with many families of people with dementia ﬁnd that conferring with the whole family is important. Discuss this problem frankly with the doctor and ask him to be as open as he can be with the whole family.
In addition to the knowledge and experience of a physician, you may need the skills of a registered nurse who can work with the physician. The nurse may be the one whom you can reach most easily and who can coordinate the work that you, the doctor, and others do to provide the best possible care. She may be the one who understands the difﬁculties of caring for an ill person at home. She can observe the person for changes in her health status that need to be reported to the doctor, and she can give you support and counsel. After talking with you, the nurse can identify and help solve many of the problems you face. She can teach you how to provide practical care for the person (coping with catastrophic reactions, giving baths, helping with eating problems, managing a wheelchair). She can teach you how and when to give medicine and how to know whether it is working correctly. A nurse may be available to come to your home to assess the person and offer suggestions for simplifying the person’s environment and minimizing the effort you need to expend. A licensed vocational (practical) nurse may also be helpful to you. Your physician should be able to refer you to a nurse, or you can locate this help by calling your health department or a home health agency such as the Visiting Nurse Association. Medicare or health insurance pays for nursing services in speciﬁc situations if they are ordered by a physician (see pages 244–46). In some areas, an occupational therapist or physical therapist may be available to help.
The Social Worker
Social workers have a unique combination of skills: they know the resources and services in your community and they are skilled in assessing your situation and needs and matching these with available services. Some people think of social workers as ‘‘just for the poor.’’ This is not true. They are professionals whose skills in helping you ﬁnd resources can be invaluable. They can also provide practical counseling and help you and your family think through plans. They can help families work out disagreements over care. Your physician may be able to refer you to a social worker, or, if the impaired person is hospitalized, the hospital social worker may be able to help you. The local ofﬁce on aging may have a social worker on the staff who will help anyone over 60. Most communities have family service agencies staffed by social workers. To locate local social service agencies, look in the telephone book yellow pages under ‘‘social services organizations’’ or under the listings for your state and local governments. You can write to the national ofﬁce of the Alliance for Children and Families (see Appendix 2). They accredit private agencies and can provide you with the names of your nearest agencies. Social workers work in a variety of settings, including public social service agencies, some nursing homes, senior citizen centers, public housing projects, and local ofﬁces of the state department of health. Sometimes these agencies have special units that serve elderly persons. There are social workers in private practice in some communities. Some social workers will arrange supportive services for your relative who lives out of town. Social workers are professionally trained. In many states they must also be licensed or accredited. You should know the qualiﬁcations and training of the person you select. Fees for social services vary, depending on the agency, the services you need, and whether or not you are using other services of that agency (such as a hospital). Some agencies charge according to your ability to pay. It is important to select a social worker who understands the dementing illnesses.
The Geriatric Care Manager
This relatively new profession has been established to help people coordinate the complex services needed to care for ill older adults. Many but not all geriatric care managers are knowledgeable about dementia, so it is important to get references or check with an agency such as the Alzheimer’s Association to ﬁnd out how they have helped others. You should directly ask the person about her knowledge level and experience in organizing care for people with dementia.
Increasingly powerful and effective medications are being prescribed for the management of dementia and the other illnesses people with dementia may experience. Be sure the pharmacist is aware of all the prescriptions the person is taking so that the pharmacist can watch for potential drug interactions and alert you to potential side effects, especially when the prescriptions are ordered by different physicians.