Are You an Advocate? | Lewy Body Dementia Association LBDA

Are You an Advocate?

An advocate is defined by Webster’s Dictionary as “one that pleads the cause of another.” Has it become your responsibility as caregiver to be an advocate for your friend or loved one? This usually happens when Alzheimer’s or some other form of dementia has occurred. The caregiver becomes the spokesperson for the elder person with diminished cognitive capacity.

Advocacy is needed in virtually all areas of daily life for people whose minds can no longer reason normally. Perhaps the most challenging of these is addressing medical needs. I can tell you from experience that this is certainly the most stressful area for the caregiver. My husband suffered from Parkinson’s disease dementia (PDD) for many years. (PDD is one of clinical diagnoses in the spectrum of Lewy body dementias.) During that time, I was his voice and his decision maker for all things medical.

As the primary caregiver, you should know the individual better than anyone else. You will best be able to determine if there has been a change in overall health, personality, physical capacity, or cognitive ability. You will decide if a visit to the doctor is needed and be responsible for providing the doctor with the detailed information concerning the problem. You will be the spokesperson.

Doctors usually have a magic pill that will help. Medications are extremely important in the control and cure of certain illnesses, but most medications come with a list of possible side effects. If you receive a new medication each time you have a problem, soon you are taking a number of medications each day. It is important for the advocate to know all the medications being taken and the possible side effects of each one. Side effects may take weeks or even months to occur. My husband was placed on medication for Parkinson’s. After several weeks, I thought his disease was progressing very rapidly. I couldn’t believe how he had deteriorated. I looked up the less common side effects of the drugs he was taking, and much to my surprise most of what was happening to him was listed there. When I had the doctor discontinue the Parkinson’s drug, he was back to his old self in a short period of time.

Drugs can have dangerous interactions with other drugs, with food, and even with vitamins and other supplements. It is important to ask questions of the doctor and pharmacist and read as much as you can about any drugs being taken.

When you talk to the doctor, don’t be afraid to ask questions. If a new drug is being prescribed, you need to know what it is going to do for the patient so you can make an informed decision about whether you think the benefits outweigh the possible side effects. If the doctor recommends the patient have medical tests, depending upon the physical capabilities of the patient, you may need to ask what is involved in taking the test. My husband once went for a test that required him to stand on a machine and roll over on a table, neither of which he could do. The doctor performing the test said this happens more frequently than it should. It is a waste of time and money.

Another consideration when the doctor is making recommendations for treatment is whether or not the patient really plans to follow-through if testing or surgery is required. When he didn’t feel well, my husband wanted me to take him to the doctor to find out what was wrong. The doctor would examine him and say he needed to have a test done to see if he needed additional medication or surgery. He said he didn’t want any more pills because he was taking too many already, he didn’t want to go through tests, and he didn’t want surgery. I would then tell him there was probably no need to take him to the doctor if he didn’t want to pursue treatment. I would, however, definitely recommend a test for dementia if you feel it is a consideration. After spending time with a number of people with dementia, I can tell you that in the earlier stages they can be very good at bluffing their way through a conversation. Unless asked specific questions that have a correct or incorrect answer, they are able to carry on a polite conversation. They are only stumped if asked things like who is the president, what month is this, in what city do you live, etc.

As you can see, being an advocate for the healthcare of another individual is challenging. It can be rewarding. It is especially rewarding when you find ways to improve the day-to-day quality of life for that person. It is worth the stress if you can find the balance needed so the patient can enjoy each day to the fullest. I am very proud and happy that I was able to be my husband’s advocate.

“Are You an Advocate?” by Nancy Malheiro is reprinted with permission from Hurley Elder Care Law.