Caregiving Questions

As a health care provider for Alzheimer’s disease patients, you have a great deal of experience in being able to assess your father-in-law’s current abilities. Explain to his family that it is often better (both mentally and physically) for Alzheimer’s patients to be encouraged to do things for themselves as much as they are able. This gives them a sense of purpose and control over their lives, and may help to decrease the occurrence of depression or other negative behaviors. You can use brochures from our organization, such as "Symptoms and Stages of Alzheimer's Disease," which details the progression of Alzheimer's, as aids in discussing your father-in-law’s situation with his family.

Of course, you will all have to use common sense in determining when the time is right for you to step in and help him. For example, at some point it will be unsafe for him to drive, at which point he will have to be chauffeured by you or other family members. However, he should be encouraged to continue his daily grooming routine on his own (or with limited assistance), any small household chores, and daily physical activity for as long as possible.

Please consult the patient’s physician and/or eye care specialist to determine if there are other glaucoma medications that could be tried to help reduce intraocular eye pressure.

You are right to be concerned about how a future move will affect your mother-in-law, as patients with advanced dementia sometimes become quite upset by radical change and never really adapt to their new environments. However, this is not to say that it cannot be done. Dementia patients often need to be moved from home to a facility or from one facility to another, and if the move is handled in a way to minimize stress, then it can be successful. It is impossible to predict how your mother-in-law will react should she become a widow, because it will truly depend on what her mental status is at that time.

My best advice is to sit down with the family – as many of them as possible – and discuss what is best for your mother-in-law. It is not uncommon for family members to be in denial over a loved one’s dementia diagnosis, but they will have to accept that this is fact and that there are hard decisions to be made. If you are to be the primary caregiver for your mother-in-law in the event of your father-in-law’s passing, then it may be warranted to consult with an attorney specializing in elderly issues regarding any legal documents you will require (such as a power of attorney, etc.) In the meantime, if your father-in-law is capable of providing adequate care for his wife and if she is happiest in her own home, then it should be fine to leave her where she is and deal with moving her later should the need arise.

It can be very difficult to speak openly with a beloved family member who is suffering from Alzheimer's disease. However, if this diagnosis has been confirmed by a doctor, then I feel you have a moral obligation to tell your husband. If you prefer not to be the bearer of bad news (or if you do not think he will believe what you say), either ask his doctor to speak to him or to be present when you talk to your husband. Your husband will have to come to terms with this in his own time and in his own way, and it will undoubtedly be difficult for him, but you can be there to provide him with plenty of patience, understanding, love and support. Our organization provides information that you can download and print, such as "Symptoms and Stages of Alzheimer's Disease," which details the progression of Alzheimer's and may be useful in talking with your husband. If you have not already done so, both you and your spouse may also want to consider joining an Alzheimer's support group in your community.

Based on what you have said about your mother's parents not having any signs of dementia, I do not think that your mother has Familial Alzheimer's disease (FAD). FAD is an inherited, rare form of the disease, affecting less than 10 percent of AD patients. It is inherited in an autosomal dominant manner, meaning that one of your mother's parents would have to have FAD in order for your mother to get it.

You do not say for which gene the doctor tested your mother. Familial Alzheimer's disease (FAD) is typically caused by one of three gene mutations on chromosomes 1 (presenilin-2 gene (PS2)), 14 (presenilin-1 gene (PS1)) and 21 (amyloid precursor protein gene (APP)). At the moment, it is only possible to test for the PS1 gene clinically — PS2 and APP genetic testing are currently only performed for research purposes. However, there are also genetic tests to identify which apolipoprotein E (ApoE) alleles a person is carrying, as certain ApoE genotypes are more highly correlated with Alzheimer's disease than are others. For example, the ApoE4 gene increases the risk of developing the late-onset form of the disease. You mother could have been tested for the ApoE gene for example, which is not associated with FAD.

There is no one gene that definitely causes Alzheimer's disease (AD) in all cases. Scientists are continually discovering new mutations that are linked to Alzheimer's —either in known "Alzheimer's" genetic locations or in new genes previously unassociated with AD. A number of different mutations within each of these genes have been recognized, and not all of these mutations are inherited. Mutations can occur randomly and spontaneously, so an offspring may have an altogether new trait (or genetic mutation) that neither parent had. So it is also possible that your mother's genetic test revealed a spontaneous mutation in a gene associated with Alzheimer's disease. However, this would not be considered "Familial Alzheimer's disease" because it was not inherited. Please talk with her doctor about the results of her test, or ask to be referred to a genetic counselor who can provide you with more detailed information.

On average, patients with Alzheimer's disease live for 5 to 10 years after diagnosis. FAD (also sometimes referred to as early-onset AD) has been known to progress faster than non-familial AD, and so the average life expectancy of a FAD patient may be somewhat lower.

Alzheimer's disease slowly steals the minds of its victims, leading to memory loss, confusion, impaired judgment, personality changes, disorientation and the inability to communicate. Keep in mind that anything your mother-in-law says or does that are out of character for her are a function of the disease and are not purposely meant to hurt, annoy, or frustrate you. There may be times when your mother-in-law may not even remember her own name; remembering what her beliefs are may be far too difficult a concept for her to grasp. But it is also possible for her to have moments of lucidity, wherein you may be able to speak with her about her beliefs. Just be patient and understanding, and do not argue because it will only upset her. Talk to her about religion or anything else— she may not always comprehend what you are talking about but the attention she receives will be greatly beneficial.

If you are troubled by the thought of your mother-in-law not remembering her religious beliefs, please consider talking to a spiritual leader at your congregation. You can also contact a caregiver's support group in your local area.

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 discomfort they experience may cause them to become anxious and agitated when the subject of bathing comes up. It is therefore important to try to remain calm and understanding of their feelings, and be flexible in how you might accomplish the bathing task. For example, it may be easier to wash your mother's hair in the sink rather than in the tub or shower.

Generally, it is not advisable to fight with an Alzheimer's patient because they can cause injury to you or themselves. She may simply not understand what you are trying to do or why. You should explain what you want her to do with simple, straightforward instructions. Be patient and reassuring. It is not really necessary that your mother takes a bath every day, so you may want to 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. Also, make sure that the room she is undressing and/or bathing in is warm and comfortable. Finally, there are medications that may be effective to reduce your mother's anxiety and her aggression toward you—please talk with your mother's doctor about this.

During the final stage of Alzheimer's disease, patients can lose the ability to chew and swallow. A patient with advanced dementia should be examined by a doctor to determine whether or not he can swallow correctly. A feeding tube may be necessary in some cases where the patient has lost all ability to swallow. This option should be discussed with the patient's family first, taking into account any final directives, such as a living will, the patient may have had. However, if the patient is still capable of swallowing, then hand feeding could potentially be used instead of tube feeding. The patient may additionally benefit from the human contact involved with hand feeding. Please consult the patient's physician whether or not hand feeding is an option.

Additionally, while the patient is still capable of eating on his own, keep his food choices and meals simple, but nutritious. Serve foods that are easy to chew and swallow, or foods that are bite-size but do not pose a choking hazard, and serve them with healthy sauces or gravies so that they are well "lubricated." Encourage the patient to drink water or juice with his or her meal if dry mouth or trouble swallowing are issues. Try serving several small meals a day instead of three main meals. Additionally, the patient may benefit from an environment with reduced distractions while he is eating (turn off the TV, radio, etc.), so that he can concentrate on his food better. Most important, be patient and flexible; see which foods seem to work well in terms of taste and simplicity and don't force him to rush through a meal.