Questions & Answers

It is good that you are managing your mother’s medications because it is clear that this task is now beyond her capacity. As the disease progresses, you will gradually have to take over more of these duties, which is all part of being a responsible caregiver. Your motives obviously are in your mother’s best interest, so do not think of what you are doing as being sneaky, think instead that you are being resourceful. In certain situations, it is futile to try to reason with a patient who has dementia because their sense of logic can be obscured by the disease. So being a resourceful person and thinking of different ways to accomplish a goal is a valuable skill to have as a caregiver.

As for bathing, this can be a tricky situation. It is not uncommon for Alzheimer's patients to refuse to bathe or change their clothes, and some patients can even become violent if a caregiver tries to force them to bathe. Bathing and personal hygiene can be an issue for the Alzheimer's patient because it is so personal in nature. Some patients may be uncomfortable with the prospect of a bath, either because it is physically uncomfortable (cold bathroom, harsh scrubbing, etc.) or because they may feel embarrassed having a caregiver see them nude, vulnerable, or with incontinence problems. In any case, the subject of bathing may cause your mother to become anxious or agitated if she believes that the bath will in some way bring her discomfort or embarrassment. Your mother’s general remarks and refusal to bathe may also be her way of trying to preserve her dignity—she does want to be told what she should or should not do because it is threatening to her self-worth and how she defines herself as a person.

It is therefore important to try to remain calm and understanding of her feelings, and be flexible in how you might accomplish the bathing task. The following tips may also be of assistance:

• Try just washing your mother's hair in the sink rather than in the tub or shower.
• It is not really necessary that your mother takes a bath or shower every day—instead consider sponge baths for the in-between days. This way, she may only need to remove one piece of clothing at a time, or else just lift up her shirt, etc.
• Make sure that the room she is undressing and/or bathing in is warm and comfortable.
• Try giving baths in the morning when she may be in a better mood. If she refuses, try again when you think her mood has improved.
• Use music to your advantage—calming music can reduce agitation (think spa), or else songs she enjoys may be used to making showering more enjoyable (who doesn’t like singing in the shower?)
• If it works, you can also try bribing her—a favorite snack, outing, or activity in exchange for a bath.
• A hand-held showerhead, shower seat, non-slip mats, and large handles for gripping in the bath or shower can all aid in making the bathing experience safer and easier for you mother.

Patients in the final stages of Alzheimer's disease are easily confused, so moving such a patient to an assisted living facility can be challenging but it is not impossible. Since every patient/caregiver situation is unique, sometimes it makes better sense to wait until the late stages of the disease to place a loved one in assisted care, and sometimes it simply is more practical to do it earlier on in the disease. Since each case is unique, it is difficult to say which stage is best to transfer a patient to an assisted living center. The health and well-being of the patient and the caregiver should be the primary and secondary factors, respectively, that govern this decision.

Typically, the final stage of Alzheimer's disease may last from 1 to 3 years. On average, patients with Alzheimer's disease live for 6 to 10 years following diagnosis, although some patients live as long as 20 years. How long your father will continue in this advanced stage of the disease is dependent upon his general health prior to being diagnosed, how quickly the disease has thus far progressed, and other complicating conditions, disorders or diseases he may have. This must be an extremely trying time for you, but you can take some comfort in the knowledge that his suffering will most likely soon be over.

Your mother’s behavior is fairly typical of Alzheimer's disease, wherein these patients may repeatedly ask the same request or question over and over. Your mother's forgetfulness is just as confusing and frustrating to her as it is to you, which is why she may often get mad at your father for correcting her. Sometimes there can be an underlying emotional context to such beliefs—perhaps she longs for something or someone in her past that she associates with "home." Think about the things that were important to her when she was younger, and ask her if she misses any of these things. Her answer may enlighten you. You can also try hanging a signs about the house that have her name on it, as in "Jane’s house," “Jane’s bedroom,” “Jane’s kitchen,” etc. The sign may help to remind her that the house is really hers and not someone else’s.

The best approach, however, is to calmly tell her that she is already in her own house and then try to distract her by changing the subject. Because of the nature of Alzheimer's, this will have to be repeated many times. Just remember to always respond to her behavior with simple statements given in a calm and reassuring manner. In general, it is not a good idea to argue with an Alzheimer's patient, as this may cause her to become even more agitated or distressed. So if she is insistent or becomes angry with the answer you give, try to redirect her attention to a new subject or activity.

Memory impairment is one symptom of Alzheimer's disease, but it is also a symptom of a number of other conditions and disorders so it may be premature to think it is Alzheimer's. For example, stress, depression, vitamin B12 deficiency, interactions between medications (or side effects from a new drug), hypothyroidism (low thyroid hormone levels), and even viral infections can all cause memory problems, confusion, and mood swings. Not that having a few drinks here and there means that one has a drinking problem, but if your father imbibed more often than not, that could also affect his memory over the long-term. The excessive, long term abuse of alcohol has been shown, for instance, to contribute to the development of alcohol dementia, also known as Wernicke-Korsakoff's syndrome or alcoholic encephalopathy, which can cause impairments in memory, vision, and gait. The good news is that many of the aforementioned conditions which can cause memory impairments are treatable, but without a thorough doctor's examination it is not possible to diagnose your father or to begin to treat his memory problem

Presenilin-1 (PSEN1) and presenilin-2 (PSEN2) are cellular transmembrane proteins that are involved in amyloid-beta processing. The presenilin proteins form complexes with other proteins, and these complexes (gamma-secretases) function to chop up the amyloid precursor protein (APP) into small protein pieces, such as the amyloid-beta peptide. Mutations in either of the two presenilin genes (PSEN1 or PSEN2) have been linked to cases of early-onset Alzheimer's disease, also known as familial Alzheimer's disease (FAD). Researchers are still trying to determine the mechanism through which mutations in these genes cause the disease. Beta-amyloid is a fragment of a protein that is snipped from its parent protein, amyloid precursor protein (APP).

So what you refer to as “presenilin disease” is actually Alzheimer's disease caused by a mutation in one or both of the two genes. It is an inherited disease and is not contagious. So if your grandfather did “bring something back” from Ireland, it was something that was already present in his genes to be passed on to his descendents, not something he could have contracted while in a psychiatric facility or hospital. The test that was performed on you was probably to look for mutations in the PSEN1 and PSEN2 genes. Your testing negative means that you do not have the presenilin mutations that are associated with the development of FAD.

If you have a family history of familial Alzheimer's disease (FAD) (that is, you have a parent or close relative who developed AD before the age of 65), and are interested in genetic testing, then the best place to start regardless of where you live is your primary care physician. Your doctor can refer you to a genetic counselor and testing facility. The genetic counselor can help you understand what the tests mean, as well as take a family history and decide on the best course of action. The counselor may, for example, want to screen for possible genetic mutations in the affected relative (if he or she is still alive) in addition to screening you.

However, be aware that these genetic tests are not absolute. Even though specific mutations in particular genes have been highly-linked to the development of Alzheimer's disease, inheritance of these mutations does not guarantee that you will definitely get the disease. The environment can also influence your genes, a fact which scientists are aware of but still cannot fully explain.

On the flip side, please also recognize that even if no mutations are found, this does not necessarily mean that you are in the clear. An absence of mutations in Alzheimer disease-associated genes only means that your overall risk of developing AD is equivalent to that of the general population's risk (that is, it is much lower but it still exists because everyone is potentially at risk for developing AD). A genetic counselor will be able to more fully explain the results of such tests to you in greater detail.

Alzheimer's disease and prion diseases (such as Creutzfeldt-Jakob disease (CJD)) are similar in the respect that both are characterized by abnormally folded proteins that aggregate in the brain and cause neurodegeneration. In fact, in addition to AD and prion diseases, many of the neurodegenerative diseases – such as Parkinson's disease, fronto-temporal dementia (FTD), and Lewy body disease (LBD) – are sometimes referred to as “conformational disorders” because of the irregular conformation of the misfolded proteins associated with each of the diseases. The main difference between prion diseases and non-prion diseases is the fact that prion diseases are sometimes transmissible, such as through eating animal products contaminated with prion proteins, whereas neurodegenerative diseases such as Alzheimer's and Parkinson's disease are not.

The hallmarks of Alzheimer's disease are brain amyloid plaques (resulting from the accumulation of the protein beta-amyloid) and neurofibrillary tangles (caused by intracellular accumulations of the tau protein). In a healthy brain, these proteins are produced for normal cellular requirements, then broken down and eliminated when they are no longer needed. In Alzheimer's disease, the beta-amyloid (A) fragments and tau proteins do not fold correctly and therefore cannot be broken down. A forms what are called beta-sheet structures and accumulate to form hard, insoluble amyloid plaques surrounding the neurons in the brain, and tau forms neurofibrillary tangles within neurons. Similarly, in CJD and other prion diseases, the diseased prion protein (PrPSc) causes normal harmless prion proteins (PrPC) to adopt a beta-sheet conformation, which is a very stable structure that prompts the abnormally-folded proteins to aggregate and deposit in the brain. The deposits cause cellular damage leading to neuronal death and loss of brain tissue.

Because of the similarities between the prion diseases and AD, some researchers have wondered whether prions are to blame for neurodegenerative diseases such as AD. At the moment, there is no hard evidence to suggest that prions cause Alzheimer's disease or any other non-prion neurodegenerative disorders.