Caring for someone with Alzheimer's or Dementia

Alzheimer's disease is the most common form of dementia. It’s an irreversible, degenerative disorder that destroys brain cells, causing a loss of memory, understanding and judgement.

While Alzheimer's usually affects people over the age of 65, it’s not a normal part of the aging process. Unfortunately, the cause of Alzheimer's is not known, and there is no cure.

The three stages of Alzheimer's disease

The early stage. In this stage, symptoms can include forgetfulness, trouble understanding conversations or remembering words. There may also be changes in mood, behaviour or physical activity.

The middle stage. In this stage, the illness causes a progressive decline in the person's mental and physical capacity. People become increasingly confused, forgetful, disoriented, and may have trouble recognizing family and friends. The person may wander or need assistance with simple tasks, such as bathing and dressing.

The late stage. In this stage, the person may be unable to communicate or care for him or herself. They can have difficulty eating, and may lose control of bodily functions.

Caring for those with Alzheimer's and Dementia

If you’re caring for a spouse or parent with dementia or Alzheimer's, you're not alone. More than 300,000 Canadians suffer from the disease or related dementias. The Canadian Study of Health and Aging found that half of those with dementia are cared for at home, with more than 70 per cent receiving informal care from their wives or adult daughters. While half of the spouses and daughters are over 60 years of age, there is also an increasing number of women who are juggling caregiving while working and caring for their own children.

Becoming a caregiver

When a loved one is diagnosed with Alzheimer's, it can be a devastating discovery. Your loved one's initial confusion and forgetfulness can be challenging. Watching his or her memory and physical capabilities slip away will be distressing. Finally, realizing that you and this person are becoming strangers to one another may cause heartache.

It’s important that you and others who provide care to your loved one do not lose sight of the person they once were. No matter what changes the disease inflicts, this person is still entitled to his or her dignity and respect. Your loved one still needs compassion, friendship and a sense of belonging.

What caregivers can expect

As noted earlier, this is a progressive disease that causes gradual changes to the person's mental and physical state. Initially, it’s important to focus on the person's abilities rather than what has been lost. Helping your loved one remain as independent as possible, as long as it’s safe, will help maintain their dignity and sense of control.

This positive attitude needs to be balanced with a constant vigilance for signs that further assistance is needed. Here are a few cautions to watch for, even in the early stages of the disease:

Alcohol. Even in small amounts, it can worsen the confusion caused by Alzheimer's.

Medication mix-ups. Confusion and memory lapses can cause those with Alzheimer's to take too much or too little medication, so be sure to supervise.

Driving. Even in the early stages of the disease, driving may be unsafe. There is potential for confusion, slow response and getting lost.

Home safety. Watch for possible hazards in your home, such as sharp objects or dangerous chemicals. Be sure smoke detectors are working and consider installing support bars in showers and beside toilets.

Changing and challenging behaviour

While everyone's experience is unique, there are certain behaviours that are common among Alzheimer's sufferers, including:

Confusion or trouble understanding conversations or simple tasks
Wandering or getting lost
Suspicion or delusions, and thinking that possessions have been stolen or hidden
Aggression
Repetitive activity, including tapping fingers, repeating words, etc.
Sexual behaviour, such as removing clothing, making sexual advances, etc.

Stages of care

At the onset of the disease, the person with Alzheimer's may only need support and monitoring. Experts suggest that the best way to help is to develop simple routines for day-to-day living and to provide gentle reminders. For example, a note on the fridge reminding your loved one to eat, laying clothes out or placing a toothbrush on the bathroom counter.

As the disease progresses, the person's mental and physical functioning will decline, resulting in the need for constant supervision and assistance. At this stage, you'll need to seek some help either in the home or through an outside facility. Things to consider include:

Seeking special training
Hiring in-home support, such as caregivers, homemakers, etc.
Finding community programs and activities for the Alzheimer's sufferer
Making changes to your home to meet the physical, safety and security needs of your loved one
Transportation assistance
Investigating long-term care facilities

Strategies for coping

Caring for someone with Alzheimer's disease is a full-time, all-consuming commitment. The day-to-day care can be physically and emotionally draining. To avoid becoming overwhelmed with the challenges involved at each stage of the illness, the Alzheimer Society of Canada offers the following suggestions:

Learn as much as you can about the disease.

Plan for the future. Make financial and health-care decisions when the person is able to do so. Create a backup plan should you be unable to provide care.

Recognize that you are going through a variety of emotions.

Be realistic about the disease and yourself.

Develop a support network.

Seek help from your family or through community resources.

Explore treatment options—while there is no cure, medications are available to help with some symptoms, so consult your physician.

Take care of yourself—your health is important too. Eat proper meals and exercise regularly. Find ways to relax and get the rest you need.

Take time for yourself and find respite care if necessary.

Learning that someone close to you has been diagnosed with Alzheimer’s disease or dementia will undoubtedly bring about many changes in both of your lives. Fortunately, there are many resources available to help you come to terms with being a caregiver and understand the stages of this disease. For additional information and advice, contact your family physician.

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Caring for someone with Alzheimer's or Dementia

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