Receiving An Alzheimer’s Diagnosis
An Alzheimer’s diagnosis often comes as a shock to people. If you or a loved one has been diagnosed, it may help you to know that early Alzheimer’s disease can generally be managed successfully at home.
Fight Back Against Alzheimer’s Disease Through Clinical Trials
You don’t need to make any important decisions about care right away. For now, all you need to do is absorb the diagnosis and gather basic information about managing the disease. As you learn about strategies that may improve symptoms and begin preparing for the future, you will regain a sense of control over the diagnosis. You can’t – and don’t need to – do it all at once. Small steps will get you where you need to go.
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Alzheimer’s Timeline
The cognitive changes before and during Alzheimer’s disease progress through several stages:
- Subjective cognitive decline: this means you have noticed changes in memory and thinking, but they don’t significantly affect your daily life. This would be the ideal time to contact your physician about a memory test.
- Mild cognitive impairment: problems with memory and/or thinking are greater than expected for your age, but not significant enough to affect your independence or daily routines.
- Mild Alzheimer’s: Problems with memory and thinking impact the ability to perform daily activities such as working, shopping, or banking. Common difficulties include searching for words, misplacing objects, and trouble with planning or organizing.
- Moderate Alzheimer’s: Memory loss has become more significant, and people require more assistance to manage daily activities. Symptoms may include erratic memory about personal history, confusion about time and location, moodiness or withdrawal, and changes in sleep patterns. Other people will notice the symptoms.
- Severe Alzheimer’s: At this stage, people require full-time assistance with most activities including personal care. Communication becomes increasingly difficult and general awareness dims. Alzheimer’s management is now in the hands of professionals and loved ones.
Some people may remain at each stage for several years, while others experience a more rapid or uneven progression through the stages.
An Alzheimer’s diagnosis doesn’t have to turn your world upside down. People with early Alzheimer’s disease can generally live independently, sometimes for many years. However, the disease may eventually take away the ability to:
- Drive or manage public transportation independently
- Manage personal finances
- Live safely at home
- Manage day-to-day tasks
Advance preparation can make these scenarios less frightening and more manageable. While the disease is still in its early stages, you can arrange to:
- Prepare a will and power of attorney.
- Set up joint accounts at financial institutions so that, when the time comes, a loved one can take over responsibility for personal finances.
- Look into alternative living arrangements; possibly get on the waiting list for an assisted living facility.
After an Alzheimer’s diagnosis, you or your loved one will have the option to take medications to improve symptoms and possibly delay the progression the disease.
Standard medications: Established medications for Alzheimer’s disease include cholinesterase inhibitors and the glutamate modulator memantine. About half of the people diagnosed with Alzheimer’s take such medications. While they don’t remove the brain plaque underlying the disease, they improve cognition and day-to-day function, allowing people to live independently for a longer time. All told, these medications offer meaningful help to about 70% of people who take them.
- Medications that improve mood and behaviour: Because Alzheimer’s disease often comes with mood changes, psychiatric medications may help. Antidepressants can improve mood in a withdrawn, unhappy patient, while anti-anxiety and antipsychotic medications can significantly reduce agitation or paranoid suspicion.
- Experimental medications: Alzheimer’s disease research continues to evolve. Researchers are developing a large number of medications that tackle the disease in different ways. Some may help reduce symptoms more effectively, while others are designed to slow down the disease by reducing plaque in the brain. While they are not yet available as prescription drugs, you can access them by enrolling in a medication trial.
Medication is only a part of the toolkit for managing Alzheimer’s disease. Other strategies include:
- Communication programs: These programs help you express feelings and connect with other people dealing with an Alzheimer’s diagnosis and symptoms.
- Essential Conversations Project: The program connects families with a facilitator, who helps participants broach difficult but important topics, such as accepting the diagnosis or resolving disputes around care. Families that are geographically spread apart can take the program via Skype.
- Communication Therapy in Alzheimer’s disease: A step beyond speech therapy, this program seeks to “enhance communication in whatever form.”
- Activity programs: These programs get people with Alzheimer’s disease out of the house and engaged in group activities such as calisthenics or dancing.
- Safety-proofing: You can install safety features in the home, such as automatic shut-offs for your kettle or stove; a Medic Alert bracelet can enhance safety outside the home.
If you have been referred to Toronto Memory Program’s memory clinic, we can steer you to these programs and tools.
Fight Back: Join an Alzheimer’s Clinical Trial
Joining an Alzheimer’s clinical trial gives you a chance to benefit from the medications or lifestyle strategies being investigated. It’s also a way for you to contribute to scientific knowledge and progress. Alzheimer’s treatment trials fall into two categories:
- Symptom management trials: these trials generally study medications that improve brain function by altering the chemical balance in the brain
- Disease-modifying trials: these trials study experimental medications that slow disease – for example, by preventing the accumulation of amyloid plaque.
Toronto Memory Program participates in both types of trials. Here is a list of all current trials involving Toronto Memory Program. Interested in learning more? Contact us at 416-386-9606 or research@memorydisorders.ca.
