When a loved one is diagnosed with Alzheimer's it can have a devastating effect on friends and family. In fact, the disease is often described as the 'family disease' because it impacts so many people, changing lives dramatically.

Friends and family who choose to take on the role of caregiver to a person affected by Alzheimer's have a significant journey ahead of them. They need to consider not only the value of caring for their loved one through the various stages of the disease and spending valuable time together, but also the potential for personal stress, depression, and a long grieving process.

If you are a caregiver now, or might take on this role in the future, it's wise to learn about Alzheimer's and its signs of progression, and how you can provide care and support to your loved one. Unfortunately, it's inevitable that family relationships and dynamics will change. But the right caregiver support can help maintain the quality of life for a person affected by Alzheimers, and help family and friends adjust as the disease progresses.

What is Alzheimer's?

Alzheimer's disease is a degenerative brain disease that gradually affects an individual's memory and ability to reason, learn new things, or make sense of the world around them.

Most cases (approximately 90 to 95 per cent) are sporadic and have no single, identifiable cause. A much smaller amount (approximately five to 10 per cent) has a rare genetic link. Increasing age is the highest risk factor for the sporadic forms of the disease, which affects approximately one in 10 individuals over the age of 65. The rarer, inherited forms of the disease can affect individuals at a much younger age.

Although there is no cure for Alzheimer's, the good news is that earlier diagnosis and new medical treatments are helping those affected better cope with the disease's effects. As well, researchers are making new strides in understanding how the disease works and its various stages of progression.

The Signs of Alzheimer's

Memory abilities change as we grow older, but the signs of Alzheimer's entail much more than this: people with Alzheimer's experience memory and other physical and psychological changes that increasingly affect their ability to perform basic day-to-day activities.

The disease can manifest itself in many ways. But in most cases, the areas of the brain that are important to memory are affected first.

As the disease moves to other areas of the brain and brain cells progressively cease to function over time, it affects other essential systems in the body. This process can happen at very different rates for different people.

Signs to watch for include:

• memory loss and difficulty remembering recently learned information;
• difficulty with familiar, day-to-day tasks;
• problems communicating or relaying information;
• uncertainty of time and place;
• a decline in judgement;
• misplacing things and frequently putting things in unusual places;
• personality and behavioural changes, sudden mood swings; and a
• loss of interest in normally enjoyed activities.

Keep in mind that many symptoms that look like Alzheimer's can be caused by other treatable conditions. If you recognize these signs in a loved one, it's a good idea to encourage them to consult a physician. To ease any embarrassment your loved one may have in talking to the family doctor about these symptoms, suggest they make this consultation part of a 'general physical.' Early detection of Alzheimer's or any other disorder is important to getting the right treatment, care and support.

When a loved one is diagnosed with Alzheimer's

After the initial diagnosis of Alzheimer's, it's not uncommon for you and/or your loved one to spend a certain amount of time in denial. This is normal and you may need to allow this denial period to run its course. But it's important to bring yourself back to reality, because, as a caregiver, you have a lot to learn.

Finding out all you can about Alzheimer's and developing realistic expectations about your loved one's abilities and changing behaviour is the first step. Read books, use online resources, consult with dependent care specialists, check out caregiving support groups or workshops and seminars. The most important things for a caregiver to learn about are:

• when, how and how much you should support your loved one with day-to-day activities;
• how to communicate with your loved one as the disease progresses;
• how to manage difficult or unusual behaviour;
• the safety of your loved one;
• how to manage your loved one's financial issues and make long-term care decisions.

In the early to mid stages of the disease, while your loved one is still somewhat independent, you can do many things to make tasks less cumbersome such as providing pre-prepared meals and helping with daily chores. As the disease progresses, you may have to consider other arrangements such as the assistance of a dependent/home care professional or, if necessary, relocating your loved one to a long-term care facility.

Caregiver Tips

Since each person's experience with the symptoms and progression of the disease differs, caregiving techniques vary. However, it's important for all caregivers to understand that they will have to modify the way they communicate and interact with their loved one as the disease progresses. The following tips may help:

Frequently assess the level of assistance that your loved one requires as the disease progresses. For example, do they need help bathing, grooming, dressing or completing other necessary daily activities?

Expect frustration, agitation and even aggressive behaviour as these are common reactions when tasks or decisions once easy for your loved one to complete become difficult.

Reduce the complexity of decisions for your loved one to help reduce anxiety. For example, simplify deciding what outfit to wear in the morning by offering two options rather than several.

Reduce the complexity of tasks for your loved one to help reduce frustration. For example, provide simple one-step-at-a-time instructions if your loved one is having difficulty with a task.

Try to stay flexible and don't worry about the way things 'should' or 'have always' been done. If there is no danger in how a loved one chooses to do a task, refrain from correcting them. After all, you're in a much better position to handle change than your loved one.

Create a calming environment that limits loud noises, large gatherings of people, and changes to routines. Changes in surroundings and other distractions can cause anxiety and impact your loved one's ability to think clearly.

Be patient when communicating and understand that your loved one's ability to use language the way they once could will decrease as the disease progresses. It's also often common for their behaviour to eventually become the route by which they communicate wants and feelings.

Create a safe environment that's appropriate for the different stages of the disease. This includes: creating a clear pathway around the home or residence; installing fire extinguishers and checking smoke alarms; putting locks on cabinets that contain medicine, toxic substances, or sharp objects; and controlling access to the car or other vehicles or machinery.

Plan for the future early, and talk to your loved one about when and who will manage their financial and health-related activities and make future caregiving decisions.

Take care of yourself and remember that your own care is just as important as your loved one's. This means keeping yourself physically and emotionally healthy, contacting community support groups, asking friends and family for help when you need it, and not taking on more than you can reasonably handle. As well, it's not uncommon for caregivers to experience stress and depression, so you may want to get checked for the signs and symptoms of these conditions on a regular basis.