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Family Health Magazine
GROWING OLDER

The Journey of Alzheimer Disease
Support for the 'long goodbye'

Alzheimer Disease is often likened to being on a journey. The comparison holds true for both caregivers and the person with the disease. Although a journey is often thought of as a pleasant trip, not all journeys are comfortable ones.

Being diagnosed with Alzheimer Disease is similar to beginning a journey, as both involve passing from one place to another. The passage will be different for everyone, whether you are the one with the disease, a family member or a caregiver. The journey is not always pleasant, nor is it always unpleasant - it is usually a combination of the two. All caregivers, whether male, female, husbands, wives, sons, daughters, or friends, struggle with making the Alzheimer journey.

Dementia is often referred to as an individual disease. Even if the diagnosis is the same, and regardless of the type of dementia, everyone has a unique experience or journey. Just as the disease is individual, so too is each person's story.

One of the first important steps in the journey is getting an accurate diagnosis. Many family doctors today are able to diagnose Alzheimer Disease. If the doctor or family have additional concerns, specialists can assist. It can be difficult to get the family member to the doctor and then, sometimes, have the doctor listen to your concerns.

The Health Information Act makes this more complicated. With the Act, a family cannot have open discussions about a loved one without that person's consent. For instance, if a daughter sees changes in her father, she cannot ask her father's doctor what is happening. However, family members can provide the doctor with information without asking for information in return. Sometimes this works. At other times the doctor does not see what the family does, so it can take time for a diagnosis to be made.

How can you tell whether changes in your loved one are a problem or simply part of getting older? As we age, we do not remember as well as we did when younger. However, Alzheimer Disease involves more than simply forgetting.

Memory loss, one of the first signs, can make it difficult to accept the diagnosis. Although your loved one may not be able to remember yesterday's conversation, it can still be possible to remember the name of a childhood pet. This may make the diagnosis seem unlikely. After all, we all occasionally forget a conversation or the name of someone we know. However, those with the disease forget more than just occasionally. Although long-term memories (such as the family dog's name) may be intact, problems with short-term memory (yesterday's conversation) may indicate Alzheimer Disease.

Still, memory loss alone is not proof of Alzheimer Disease, since at least one or more common signs must be present. These symptoms should demonstrate a change from the person's normal state, and may be noticed by the individual or by family members. Signs include the following:

• Difficulty with familiar tasks, such as cooking - perhaps showing ability to cook meat, but not to prepare a full meal with vegetables or salad
• Trouble dealing with finances, with bills either going unpaid or being paid twice
• Items misplaced and often in inappropriate places - jewellery may be in the sugar bowl and keys in the fridge
• Increasing difficulty finding words, often common ones, or substitution of incorrect words making it difficult to be understood
• Disorientation with time and place - getting lost walking back to a house lived in for 25 years, or calling friends to come for tea at two in the morning
• Poor or decreased judgement, changes in mood and behaviour, or changes in personality and loss of initiative.

Other issues arise immediately following diagnosis. All families need to have legal documents in place, preferably drawn up in the early stages of the disease. These documents include Enduring Power of Attorney, Personal Directives, and a Will (although the names may differ from province to province). Completing these forms can cause problems, since many complicated personal issues are associated with end-of-life legal documents. Sometimes, these emotional issues can tear a family apart.

Driving is another issue that must be considered during the early stages. While some are able to drive safely, others are not. Some communities offer independent driving assessments. In smaller areas, doctors must make the decision. No matter where you live, your family will most likely have to handle issues around loss of a driver's license. Some people become very angry with caregivers because they blame them for the loss of the license and the independence that went with it. (the Driveable Program, at www.driveable.com, is a useful resource.)

Taking medication can also become difficult. Those with Alzheimer Disease often forget about or take too much medication. A caregiver living in the home can help, or assistance of some type can be arranged. It may be difficult to accept help with medication, both in terms of administering drugs and with the individual's loss of independence.

As the disease progresses, so do signs and symptoms. Many people are not able to continue with daily activities. Grooming, dressing, cooking meals, cleaning, doing dishes and taking out the garbage are all routine activities that may become difficult. Often the person with the disease can still help with these jobs if they are broken down into smaller tasks. Often caregivers can get professionals to show how to manage these tasks.
Behavioural and psychological symptoms of dementia may arise from time to time. Remember, not everyone will have such symptoms, nor will one person have them all.

One common behavioural symptom is wandering. In the early stages, those with the disease might mention forgetting where they parked the car, not being able to find it and walking home. As the disease progresses, instead of just memory problems, there will be loss of recognition. People with the disease may want to go 'home' even if they are in their own familiar surroundings. They often look for a long-ago home. The Alzheimer Society has a national program called Safely Homeª, which is a wandering registry.

Some people with the disease experience hallucinations (seeing or hearing things, like animals or people, that are not there). Others have delusions (believe something to be true that is not, such as a spouse having an affair).

Losing communication skills is hard on both the person with the disease and the caregiver. Searching for words or sentences can make your loved one agitated. If the caregiver guesses the wrong word or sentence while trying to help, both may become frustrated.

Loss of recognition of family members is very hard for everyone. It is difficult for a husband to realize his wife can no longer cook, has trouble grooming herself, and wanders. Still, the day when she does not recognize him brings a different loss altogether. People may also no longer be able to recognize themselves. Looking in a mirror, they may see an elderly person without realizing they themselves have become old.

Moving from home to any type of facility can be challenging for both the individual and family caregiver. In the early stages, some choose to move to an assisted living facility where meals are provided and medication is dispensed. Later, most go to some type of long-term care facility. Caregivers are often told that moves are hard on the person with the disease. However, it really is individual. Many families move their loved one to long-term care without a problem. Others may have more difficulty with the transition.

As well, many families are concerned about the facility. Is there enough staff? Is the staff trained? Will my loved one have something to do or will he or she sit in a room all day? Will my loved one be given pain medication for her arthritis if she can not tell them she is in pain? The questions and concerns can be endless.

As with all diseases where there is no cure, death is part of the journey. Families experience death differently than with other diseases. Since the diagnosis, they have continually grieved losses as parts of their loved one have disappeared. First, the person becomes unable to do things he or she enjoyed. Loss of recognition follows. Eventually, the family loses the person, although the body is still there. The physical self may live on for years before the final loss. In the Reagan family's words, it is a 'long goodbye.'

Remember, there is still a personality within that body. Every once in a while, your loved one may surprise you. One caregiver relates that when he visits his wife, he must explain that he is her husband. She tells him he is crazy. They laugh about it together, even though he really is her husband. He cherishes these moments because he recognizes his wife's sense of humour.

The journey may be short or long. It will have both pleasant and unpleasant times. This experience may be one of the hardest things a family may undergo, but it can also be the most rewarding. Thankfully, you do not have to make this journey alone. The Alzheimer Society offers many resources that you and your family can access to support your own personal journey.