Caring for a Husband with Dementia: The Ultimate Survival Guide – A Sample Chapter
Author: Angela G. Gentile, MSW, RSW
Getting a Diagnosis
Doctors diagnose, nurses heal, and
caregivers make sense of it all.
— Brett H. Lewis
Suddenly you realize something isn’t right — there is a real problem — and you no longer can avoid it. Or you can’t bear to believe something is wrong and you may need help. It’s been going on far too long — for months or even years. With the support of a close family member or friend, you decide to have your husband assessed by a doctor to find out what may be going on.
Once you realize there is a real problem, it is scary to think it may be serious. The best way to handle the situation is to start by bringing your husband to the doctor. Go in with him to the appointment. Some doctors won’t allow you to be present for the appointment and will require legal papers to prove you have authority (more on this in Chapter 16). Document any sensitive information you may not want to share aloud in front of your husband. The doctor can look at the information later or read it while you are in the office. You also could send the notes to the doctor before the appointment so he or she is aware of the concerns.
Diagnosing the Cause of Dementia
The process of figuring out what is causing dementia is often not that simple. For instance, the family doctor might not feel comfortable making the diagnosis. Some doctors will refer to a geriatrician, neurologist or psychiatrist. Some psychologists specialize in working with older adults. If your husband is 65 or older, it would be a good idea for the assessment to come from someone who specializes in conditions affecting older adults, such as a geriatrician.
The doctor will likely order or administer cognitive tests, blood tests (including liver function), a urinalysis, and maybe even a chest X-ray to rule out pneumonia. There may be a referral to a geriatric psychiatrist, a geriatric mental health clinician, or a team of professionals. Other medical problems must be ruled out before there can be a definitive diagnosis. In some cases, the process can take a few months. It can cause you to worry and make you feel like you are on an emotional roller coaster.
You might suggest to your husband it has been a long time since his last complete physical, so you want him to have one. It is important to get blood work, a urinalysis, and some kind of neuro-imaging of the brain. Common types of blood work for cognitive or memory problems include hemoglobin, red blood cell count, white blood cell count, sodium, fasting blood sugar, HgbA1C, urea, creatinine, serum albumin, serum calcium, thyroid-stimulating hormone (TSH), and vitamin B12 (cobalamin).
A computerized tomography scan (CT) or magnetic resonance imaging (MRI) scan of the brain is recommended. The CT scan may be infused, which means injected with a contrast dye to enhance the images. A positron emission tomography (PET scan) may be ordered.
Some of the common symptoms of dementia can be eliminated once their reasons are determined and treated. Medical tests can help rule out any other medical problems or insufficiencies that may be contributing to decreased cognitive functioning. For example, someone with a bladder infection may appear confused, but antibiotic treatment could clear the confusion as well as the infection. There could also be a delirium component involved if there are other medical problems or conditions that can result in decreased or impaired brain functioning.
Mental or memory tests also will help with the diagnosis. I am most familiar with the Mini-Mental State Examination (MMSE) and the Montreal Cognitive Assessment (MoCA). There may be other tests available in the future, but these are the commonly used ones as I write this. Both of these tests have a total score of 30. The MoCA is a more sensitive test and is difficult for some people. It is possible someone with dementia can score high on the MMSE and low on the MoCA, so it is always helpful to do the MoCA when the MMSE score is higher (25 or more).
Other common tests include the clock-drawing test and the months of the year in reverse order. In the clock-drawing test, which is also included in the MoCA, a person must draw a large circle and put the numbers of a clock in it. Then the person is asked to draw hands to display 11:10. The way he/she draws the clock and its hands helps the assessor determine how well he/she can reason, problem solve, and access working memory. When a person is asked to list the months of the year in reverse order, the assessor quickly and easily can determine his/her concentration and memory skills.
Many different tests can be performed. None of the tests alone determines a diagnosis of dementia. The test results can help determine if your husband is having difficulties in his thinking skills. This will naturally prompt other tests and assessments to help determine a diagnosis.
Once a diagnosis is made, your husband’s doctor will most likely discuss treatment options. The type and severity of the dementia-related condition will determine which treatment will be prescribed. For example, Lewy Body Dementia does not respond well to certain types of medications. There are commonly known medications prescribed for Alzheimer’s disease. There is no known cure for dementia, however. Medications are prescribed to help manage or lessen some of the symptoms, and they don’t work for everybody. There are always new treatments being made available, so ask the doctor about options for your husband’s condition.
Assessing Abilities in Daily Living Activities
The other important aspect of diagnosis is assessing how your husband is able to manage or handle day-to-day tasks. For example, if your husband is no longer driving, can no longer pay the bills, and is having trouble remembering to take his medications, his daily living or functioning is affected. If you notice he is having trouble with simple things such as knowing what day it is, or if he has abandoned his hobbies, he may have dementia. Difficulties with problem solving and word retrieval also are key symptoms you should mention to the doctor.
Consider your husband’s ability to stay safe. For example, help him if he forgets to take his medications or turn off the stove.
Learning About Dementia and Sharing the News
Once a diagnosis is made, your husband’s doctor will most likely share this information with you. It is a good idea to name someone else, usually a close family member, as a backup in case you are unavailable to discuss your husband’s condition with the doctor. Be sure the doctor knows who this person is and has the necessary contact information. Some doctors will require legal proof that you are authorized to deal with your husband’s health-related matters, and, as I mentioned previously, this will be discussed in more detail in Chapter 16.
The next step is to become educated on dementia so you can be prepared for what is to come. You may feel a sense of loss and sadness. You might worry about your future and whether you can handle it. We will focus more on grief and loss in Chapter 11.
After becoming educated about the condition, you must decide with whom to share the information. Your children, his siblings, other relatives, his friends, and the grandchildren need to know about his condition in order for them to understand him and his behaviour. Their knowing about your husband’s condition will help them support you. Encourage them to learn about dementia as well, so that they can interact with him in an appropriate and respectful manner. Check out some of the great resources available through your local Alzheimer Society or Alzheimer’s Association. In addition, the next chapter will provide you with more information.
The tests my husband has had are:
My husband needs extra help with:
With regard to the diagnosis, I feel:
These people know about my husband’s condition or need to know:
Copyright © 2015 Angela G. Gentile
If you enjoyed this sample, and want to learn more about caring for a loved one with dementia, purchase Caring for a Husband with Dementia: The Ultimate Survival Guide by Angela G. Gentile, MSW, RSW.