People with early-onset dementia and Alzheimer’s often lack peer support

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Imagine being diagnosed with Alzheimer's disease. Imagine the disbelief, anguish, perhaps the feeling of "why me?"

Now imagine how strange it must feel to get that diagnosis at the age of 40 or 50. Your kids may still be growing up, your spouse still working. The face reflected in the mirror doesn't look like that of someone with Alzheimer's disease – it isn't all wrinkled, your hair isn't all white, you're still fit and nimble.

You had been worried about the signs: losing your car in the parking lot, becoming less efficient at work, forgetting an important meeting – then losing your job because of it. Now you don't know which was worse: losing your job because your superiors thought you were disorganized and inefficient, or knowing it was because you have Alzheimer's. You wonder what else you'll lose to this disease.

You need help. You need to speak to others who have this illness and are going through the same thing, or you feel you may go mad.

You've heard that support groups are helpful for people suffering from serious illnesses, so you look for one for people with Alzheimer's disease. You arrange to attend a group that's close to home because you're no longer allowed to drive. You walk into the room but notice that other people in the group don't look like you – some even ask if you're the moderator. You're flattered but you realize they're asking because you're decades younger than them. The moderator arrives and is the only person in the room close to your age.

You sit with the group and try to listen, but the issues discussed are markedly different from your own. You want to talk about the job you lost but, unlike the others, you didn't get to retire at 65. You were fired, and the aspirations and financial stability that came with your career disappeared. You have no pension to rely on and are worried about the loss of income. You have no grandchildren to talk about as you're still busy raising your kids, who are trying to be helpful through your illness – which only makes you feel more helpless.

It's difficult to share your fears with this group because they aren't experiencing the same issues. You aren't the "typical face" of Alzheimer's disease – people have even questioned whether you are really suffering from it.

With support groups having so many positive benefits and being readily available for many other afflictions, why don't they exist for people with early-onset dementia?

There are currently 47.5 million people around the world living with dementia – 5 per cent of them young-onset – and they need help now. Although we strive toward finding a cure, we need to find ways to empower people to live better with dementia.

Peer support has been shown to be helpful for patients with a wide range of conditions including cancer, depression, HIV/AIDS and brain injury. One of the biggest advantages of being in a support group is helping a patient realize that he or she is not alone – that there are other people sharing in the same experiences and having the same problems. This is often a revelation and a huge relief. It can be helpful just talking with other people who are in the same boat.

Among the other benefits of participating in support groups are:

– Feeling less isolated.

– Gaining a sense of empowerment and control.

– Improving coping skills.

– Reducing distress, depression and/or anxiety.

– Developing a better understanding of a particular disease.

– Getting practical advice or information about treatment options.

– Comparing notes about resources.

Research has shown that these types of interactions help people cope better with their illness. In these groups, feelings are often validated, social isolation is reduced and experiences are normalized. But to feel this connection, it's critical that people see the others in the group as similar to themselves. This connection enables the group's members to support each other and possibly find new ways of dealing with a particular problem. Peer groups sometimes even provide patients with a sense of satisfaction from helping others.

It's important that people of all ages with dementia have the resources they need to help them cope and improve their quality of life. The demand for support groups for young-onset dementia is great and the time for them is now. But currently, these are few or non-existent in much of Canada, other than an online support group that offers a place for people with young-onset dementia to share their stories.

As was the case with support groups for other illnesses, these types of resources become available when grassroots initiatives create a demand for them. Some options might be to talk to your health-care provider or inquire at a local Alzheimer's disease association about creating an informal group with a volunteer moderator.

We often hear that patients and their family members are their own best advocates when it comes to their care. This idea can be extended to creating support resources to help them cope with their illnesses.

Health Advisor contributors share their knowledge in fields ranging from fitness to psychology, pediatrics to aging.

Dr. Carmela Tartaglia is a neurologist at the Krembil Neuroscience Centre's Memory Clinic at Toronto Western Hospital, researcher at the Tanz Centre for Research in Neurodegenerative Diseaseand assistant professor at the University of Toronto.