Understanding Alzheimer’s Disease

What is Alzheimer’s Disease?

Contrary to what many people think, Alzheimer’s disease is not a normal part of aging. It is a disease in which the nerve cells in the area of the brain that control memory, thinking and judgment are damaged, and the normal transmission of messages between cells is affected. Messages are passed between nerve cells by neurotransmitters. It has been found that one particular transmitter is absent in the brain of Alzheimer’s sufferers. During the course of the disease, the thinking center of the brain shrinks, which in turn limits the ability of the brain to function at optimal level. The nerve cells, develop changes (detectable after death at autopsy only), called neuritic plaques and neurofibrillary tangle.

What about Diagnosis?

There is no one test available to determine whether a person has Alzheimer’s disease. It is actually diagnosed by ruling out all other
conditions that may cause memory loss. A positive diagnosis can only be made by examining brain tissue after death. Then the diagnosis is made on the basis of the number and concentration of tangles in the short-term memory center of the brain.

Depression and Memory Loss

In the early stages of the disease, depression may sometimes be present. The sufferer becomes distressed at what is happening — he recognizes that his memory is becoming increasingly poor. If diagnosed in an early stage of Alzheimer’s disease, the “accompanying depression” usually improves with medication, even though the memory loss associated
with Alzheimer’s disease is still there.

Symptoms of Alzheimer’s Disease Vary

Not all sufferers manifest the same symptoms at the same time. The course of the disease is unpredictable, as is the intensity of the symptoms in each individual’s case. What can be very distressing for the family is that the sufferer looks perfectly normal, while behaving abnormally. This often leads family members to deny that anything is happening.

Stages of Alzheimer’s Disease

Although the course of the disease is unpredictable, it has been observed that the symptoms tend to fall into three stages that often overlap.

Stage 1 (Duration 2-4 Years):
Leading up to and Inclusive of Diagnosis

The primary symptom is that short-term memory is noticeably affected. Other symptoms that may occur with varying intensity are:

• difficulty in concentrating

• poor judgment

• hesitancy about doing things that once came easily

• sometimes problems with finding the right expression or word

• often withdrawn

• some perceptible changes may occur in personality

• anxiety about not being able to remember as well

• anxiety about what is happening to him

• difficulty coming to decisions

Why is an Evaluation Necessary?

It is very important that a medical-neurological evaluation be done to rule out whether treatable conditions are causing the symptoms. Confusion, disorientation and severe forgetfulness can arise from a variety of causes, including dehydration, malnutrition, improper use of medications, excessive alcohol use, emotional and physical traumas, acute infections and relocation. These conditions may cause a temporary delirium which is reversible once the cause is identified and treated. Alternately, the care-recipient who exhibits “senility” may actually be very depressed; this condition too, can be alleviated, when a proper diagnosis is made.

There are also irreversible conditions other than Alzheimer’s that may cause some of the same symptoms — for example, small strokes and cerebral arteriosclerosis. While these conditions are not treatable, their courses are different and in some cases more benign than Alzheimer’s disease.

A proper medical diagnosis is the first step in dealing with the disease. The diagnosis is one of exclusion. There is presently no test available which can determine with certainty whether one has the disease. Rather a presumptive diagnosis is made, as other conditions are ruled out.

It is normal to feel hopeless and helpless when confronted with the diagnosis. You may even feel anger and the majority of caregivers go
into denial, just not wanting to accept what is happening. However,
information about the different stages of the disease and how to cope (much of it learned from caregivers who have already walked the path) can be very helpful.

Managing the Needs in Stage 1

Once the diagnosis is confirmed, work toward setting up a care-plan for the future and arrange the sufferer’s legal and financial affairs, while he feels that he still has some control over those affairs.

Plan Ahead

A Care-Plan

It is important to understand what demands the different stages may make on your time and energies. Read everything you can find about the disease and its challenges.

Hold a family conference and talk about how the future requirements of care can be divided up among family members. Write down the decisions that are reached. Identify the services and professionals known as the “formal support system” before you need them. Learn ahead of time what their functions and limitations are, how to access them, whether any services are free, funded, or are fees based on income level. A care-plan will make all the difference in how you cope with the course of the disease.

Financial and Legal Planning

Consult a lawyer and financial advisor about what legal and financial arrangements will be needed. This will help avoid what can sometimes be difficult problems later on. As far as possible include the person with Alzheimer’s disease in discussions; this may allay some of his fears.

Although he may not have many financial resources, expert advice should be sought. Many advisors will provide a first interview free of charge. Such advisors may include lawyers, insurance agents, accountants, tax consultants, bankers and bank trust officers and certified financial planners. Generally one principal advisor will work with the person with Alzheimer’s and his family; where necessary, consulting with others on your behalf to plan for the Alzheimer’s sufferer’s total legal and financial needs.

To find a competent advisor, you may start with the family’s lawyer. Or ask friends and family members whether they know of a competent
professional. Or call the local Bar Association; they have an Attorney Referral Service. Ideally the advisor should be someone who is experienced in dealing with situations in which the client has Alzheimer’s or
a related disorder. Before you go for the consultation, establish whether the initial interview is free of charge and what the follow-up fees are, and for what services.

It is extremely helpful to organize documents into categories relating to the Alzheimer’s sufferer’s legal and financial affairs (e.g. debts, such as mortgage, car loans, credit card charges, insurance premiums, etc.) and then make a list of assets (stocks, bonds, savings accounts, property owned) before going to the actual appointment.

It probably will not be easy to talk about your family member’s private affairs with him: in fact he may be very reluctant. Try to make him understand that it is in his longer-term best interests. As his condition worsens there may be added medical and living expenses; it is useful for families to know what assets are available to meet such costs. Additionally talk to all the professionals involved in any way with his legal and financial affairs, and explain what is happening. In fact you may need a lawyer to help you get access to some records.

Among the documents and certificates you should try to locate are the following (being cognizant that bank books, stock certificates, etc. may be kept in strange places — hidden away in drawers, on top of wardrobes, under the mattress, in old boxes in the attic, basement, etc.):

• wills

• bank books and statements

• stock and bond certificates and updated statements from brokerage firms

• safety deposit boxes

• personal loans

• trust accounts

• documents re Individual Retirement Accounts

• income tax records

• pension notices

• deeds, property tax statements on any property

• evidence of any collections, i.e. antiques, art

Learn what income and other resources can later be called upon to pay bills for care. Income may be available from a wide range of sources; for instance, Social Security, pensions, checking accounts, dividends, convertible assets, individual retirement accounts, or gifts from children or a spouse. Sources of insurance may be health insurance, Medicare,
Medicaid, life insurance or VA coverage, etc. Be sure to check the clauses in any Health Insurance Policies to see whether they cover persons with Alzheimer’s disease; often these policies contain an exclusion clause.

Expenses that may ultimately be incurred could be: disability aids (adaptation of the house such as ramps, rails, etc.); hired-in help to do chores or meal preparation, transportation costs, for instance, to and from adult day care or clinics; some regular nursing support (this may be essential in stage three); incontinence gear and easy-to-manage clothing.

As the condition is in its early stages, the individual may still be considered sufficiently legally competent to draw up a Will. Powers of Attorney are also useful; in some states, they may be simple or durable. A power-of-attorney is a written document that allows one person to make certain decisions on behalf of another — the power gives one person the legal right to manage the finances, property and/or other legal matters on behalf of another person. The person granting the power must be competent and fully understand the power-of-attorney agreement at the time it is written. A Simple Power of Attorney ends when a person becomes incompetent. A Durable Power of Attorney remains in effect even after the impaired person becomes incompetent.

Another instrument that can be very helpful is that of representative payee. A “payee” is someone who can receive and use an impaired person’s benefits in the best interests of that person. At the time when the person can no longer manage his benefits, this option can be activated. In fact, agencies that issue benefits such as the Social Security Administration and the Department of Veteran Affairs, can appoint payees. Note that the Department of Veteran Affairs calls such a person a “fiduciary”; the Social Security Administration calls them “representative payees”; state social services, health or welfare departments sometimes use the term “protective payee.” (Note too that terms differ from state to state.)

When setting up a financial plan, if a considerable amount of property is involved, you should ask the advisor about trusts. Briefly, a trust instrument transfers property or money from one person to another, with certain conditions attached. The trust is managed by a third person. The person creating the trust is called the “trustor” (here it will be the impaired person). The person who receives the benefit of the trust is called the “beneficiary”; the person who manages the trust is called the “trustee.” A lawyer or banker can advise what type of trust will best meet the required needs.

Ultimately, a person with Alzheimer’s will lose what is called “legal
competence,” which is the power to manage personal, financial or
legal affairs. In this case it will become necessary for someone else
to make decisions on his behalf. Therefore, it is prudent to plan in advance who should be the person to make those decisions. A lawyer can advise on the options available. The most commonly used legal tools are a “guardianship” or a “conservatorship.” Usually a conservatorship is the more limited form of the two, in that a conservator manages the impaired person’s funds only. A guardian on the other hand, manages both personal and financial affairs. Note that in some cases, as stated above, another choice is a “durable power of attorney.” The Alzheimer’s sufferer should discuss all options with his lawyer.

Helping Your Care-Recipient Cope

Your care-recipient will be upset about what the future holds. He needs to be reassured that the family will see that he is cared for. He needs to continue to feel that he is a valued family member.

Be very vigilant about keeping him as involved as possible in the family’s activities and decision-making; this will help him to cope with his own anxiety.

Don’t talk about his memory loss in front of him and certainly not as though he is not there; such behavior on your part, can be very upsetting and demeaning for him.

He will generally be lucid a lot of the time during this phase. To help his confidence, make sure that he continues to keep as much to the former pattern of daily living as is possible.

Don’t allow him to become withdrawn because he can’t remember short-term events and conversation very well.

Don’t be demanding about normal daily activities. An example is letting him dress himself even though it takes time. Be patient; not critical. You can assist him by setting his clothes out in the order of putting on.

He will almost certainly still be able to manage simple chores which do not tax his memory, so involve him; it will help him to maintain his dignity.

If he tends to get lost when he goes on errands put his name and address in his wallet to make him feel more secure.

In the event that he forgets the names of people he knows well, prompt him discreetly, to help him save face.

Don’t confront him with complex, challenging decisions or questions; if you do, you will almost certainly add to his confusion.

Stage 2 (Duration 2-10 Years): Following Diagnosis

This stage is characteristically affected by more pronounced memory loss and even shorter memory span. Other symptoms may include:

• repeating statements

• real difficulty remembering friends’ and family members’ names

• restlessness, especially at night and during late afternoon (called ‘sundowning’)

• fear of getting into the bathtub

• real difficulty dressing

• perceptual-motor problems

• increased difficulty organizing thoughts

• problems with reading, working with numbers and writing

• more and more difficulty locating the right word

• suspiciousness, sometimes irritability

• hearing or seeing things that aren’t there in fact

Usually at some time during this stage, there is a need for constant
supervision.

Managing the Problems Associated with Stage 2

This period of the disease is very demanding on the caregiver. Generally she is required to deal with problem behaviors that are alien to
her experience. The fact that it is a loved one who is involved, makes
the challenge even more exhausting. Help with memory aids — e.g., a large sign on the toilet door; laying his clothes out in the right order; leaving around family photos taken sometime ago.

Watch for Triggers Which Set Off Difficult Behaviors

Coping with Restlessness and Wandering

Restlessness often occurs late in the afternoon or early evening. Researchers do not understand why. Try to identify what makes him fidgety,
want to leave, or pace through the house.

Locks on gates can help to keep him from getting off the property. If he wanders get an identity bracelet for him, notify the police and neighbors in the propensity and keep a current photograph of him handy for reference.

If you follow him, do not startle him by dashing up and grabbing his arm. Try to appear unconcerned and persuade him to go back with you. You may have to walk a bit before you succeed. Note his patterns — does he tend to go off in one particular direction; does he appear confused or lost?

Coping with Repetitiveness

He will be anxious about being left alone and may follow you to feel reassured that you are close by. Constant questions or statements may be part of the behavior. This can become exhausting.

It is important to recognize that the behavior is not deliberate; he doesn’t realize what he is doing.

Try to distract him with a small snack, sitting down and talking about the “old days” with a family photo album, with making that time bath-time; with music, a television or radio program or asking family or friends to call or come by at that time of day.

Coping with Fear of Bathing

It is of course important to good health to keep the person clean. Many Alzheimer’s sufferers develop a fear of water and/or a fear of getting undressed and into the bath.

If it is a fear of getting down into the bath, he may be happier using a bath seat or taking a shower. If he is upset about getting undressed, then you may convince him to wrap a towel around him while he is immersed in the water. This will make washing more difficult, but it may work.

Coping with Hallucinations or Delusions

He may believe he hears, sees or smells what no-one else can. He may get up in the middle of the night to answer the door, hear bells, hear voices, see things in the room. This can be trying to deal with.

Among measures you can take is never to challenge him. Remember he is not rational and will not understand your logic. Try to avoid having any shadows in the area of the house he is in. At night, a night light may provide enough light to take away whatever it is that triggers these hallucinations.

Coping with Hoarding

Hoarding is a behavior that can make a caregiver irritable. The person may hoard “treasures”; other people’s things or even food. It is dangerous for him to hoard and then eat food as he may become ill.

Watch the pattern of his hoarding. Providing him with a special drawer or bag may satisfy this need to be busy and secretive.

Coping with Suspiciousness and Accusations

One of the behaviors that sometimes occurs is to accuse other people, even one’s own family members of theft or trying to poison him. This can be upsetting and highly embarrassing. It is necessary to remind yourself that it is a symptom of the sad condition he is in.

Explain to anyone he suggests has stolen from him that he does have a disease of the brain. When people understand what is going on, their indignation generally fades.

Coping with Him Not Remembering Who You Are

This can be very distressing. Perhaps you are his wife of many years, a child whom he adored, a brother or sister, yet he doesn’t recognize you. Again, try to accept that it is the disease causing the problem.

You may at this stage begin the grieving process, as you will have lost touch with the person you dearly loved — there is no longer any meaningful communication. Perhaps you will need to talk to a professional about your feelings.

Developing Better Communication Skills

Good communication skills can be helpful in every life situation; they are especially important when caring for somebody suffering from Alzheimer’s disease. The following are some useful strategies:

• Speak clearly and slowly.

• Do not use long sentences or ask several questions at once. (Use simple binary “yes - no” questions.)

• Be patient; you may have to rephrase your questions.

• Remove loud noises or harsh lighting.

• Sit where he can watch your face.

• Be cognizant of your body language.

• Do not interrupt him.

• Be ready to quietly help him finish a thought.

• Do not contradict him or use an aggressive tone.

• Don’t ask questions when the sufferer is showing signs of agitation.

• Help him to preserve his dignity, for instance, by ignoring the fact that he may not be able to remember from one second to the next.

• If you notice his agitation level increasing, try to divert him: music, a snack, chatter about the family, a walk in the garden, helping with some small chore — any one of these diversions may be enough to distract him and so prevent him from becoming upset because he can’t follow.

You are principally concerned with the present; he, on the other hand, thinks about the past; sometimes, his mind goes right back to his early childhood. Of course you will become bored by hearing the same story over and over, but try to ask questions to make him feel that he is at least being listened to: it will help. If he drifts off in the middle of a thought, gently try to bring him back on course or introduce an activity so he will forget what he was talking about. Having mementos of his previous job, e.g. a picture of his farm, if he was a farmer; a picture of the car he rebuilt, if he was a mechanic, can help to stimulate long-term memories.

Implementing Earlier Decisions about Managing His Finances

You may have gotten a clear picture of the financial situation during stage 1, and you may have even set up the machinery to deal with the problems as they eventuated. Now it may be necessary to implement those plans, e.g. having Social Security and pension checks directly deposited into bank accounts.

What about You?

Get as much support and time off as you can possibly arrange. Use whatever respite services are available and affordable. It is vitally necessary for you to get away regularly and for longer periods of time.

Stage 3: The Terminal Phase

Symptoms typical of this stage:

• doesn’t recognize himself

• unable to take care of himself

• difficulty swallowing

• sleeps longer and more fitfully

• bizarre or disturbing behaviors such as constant crying, hitting,
biting, screaming, grunting noises

• loss of control over bladder and or bowels

• abusive, angry, aggressive, demanding behaviors

• bizarre sexual behaviors

Managing Stage 3

Special Care Situations

Incontinence

People with Alzheimer’s disease, may become unable to control bladder and/or bowel movements — this is called becoming incontinent. The condition can be distressing not only for the care-recipient, but for the caregiver. In fact, it is often the most distressing facet of the disease.

Coping with Angry, Aggressive Behaviors.

(Note: these behaviors do not always occur.)

• Remove photos of the person as they may confuse him even more and distress him.

• Remove mirrors as he may be startled by the image, believing it to be someone else.

• Keep all potentially dangerous implements locked away. Ensure that machinery such as lawn mowers, cars, etc. are not accessible.

• Keep emergency telephone numbers handy and those of available neighbors whose help you may need if he shows signs of attacking you.

• If he is aggressive, try not to react angrily. He does not know what he is doing.

Coping with Bizarre Sexual Behaviors

(Note: these do not occur in all cases.)

Tell yourself he doesn’t know what he is doing. Try every diversionary tactic you have developed. The doctor may suggest medications.

Implementing the Final Stage of the “Care-Plan”

Generally this is a very stressful period, the care-recipient is in the terminal stage; the caregiver feels quite helpless and often times afraid of her own safety. It is vitally important to involve professionals at this stage. They can advise and guide his care; implementing the services they consider to be appropriate.

The visiting nurse will advise on home-nursing strategies, how to cope with incontinence, how to deal with weird sexual behaviors, and difficult and aggressive behaviors.

What about You?

Get respite. Share the care as much as you can with other family members. Bring in a nurse to help bathe and care for him. Try to keep in contact with other people.

Join a caregiver’s support group. You must try to take care of yourself.

At this stage, you may become completely overwhelmed and come to the realization that you just cannot cope any longer. Nursing-home care may be the only realistic alternative.

Such a decision is never easy. It can cause you to feel inadequate, guilty and as though you are abandoning your loved one. But the care demands may just be too great.

Caring for a loved one with Alzheimer’s disease can be exhausting, overwhelming, and distressing. If you plan ahead and get in help, it can be made less stressful. You will need all the patience and love you have.