What was your mother’s diagnosis like? What was happening leading up to her diagnosis?

There are always “first signs” that something is wrong – we’ve all been there. In 2002, when I was pregnant with my third child, a baby girl after two boys, my mother was ecstatic to finally after four grandsons have a granddaughter. However, each time we spoke, she kept asking me when the baby was due and if it was still a girl. I knew that something wasn’t right. My father, a physician, was in denial and unwilling to act. Six months after my daughter Caroline was born, my 62-year-old mother was diagnosed with Alzheimer’s disease (AD). She was devastated and would call me multiple times a day telling me that the diagnosis was wrong. To avoid depression, I lied and told my mom that she was correct, that she didn’t have Alzheimer’s. For the next seven years, my mom managed to use her outgoing and friendly personality to cover up her illness.

I have witnessed the relentless and devastating effects of the disease. My once beautiful, energetic, charismatic and loving mother is now a shell of her former self. It’s been painful for our family to watch Alzheimer’s rob my mother of her strong and vibrant personality. My mother’s struggle breaks our hearts every single day. Not only did I essentially lose my mother but my children lost their grandmother. There are millions of families living this nightmare, slowly seeing their loved ones fade away, and often feeling powerless. I knew I had to turn my pain into action – for my mother, for me, for my family, for all of us.

What have been the biggest challenges?

Becoming your mother’s mother is a role reversal that is both challenging and heartbreaking. It’s a physical, emotional, financial and logistical challenge – and more so for those caregivers who are also raising children, caring for others, facing financial hardship or lacking in social and community support. It can be a lonely road.

What programs has UsAgainstAlzheimer’s created with caregivers in mind?

UsAgainstAlzheimer’s is involved in three programs that focus on caregivers. The A-List is a culturally diverse online community that includes the “worried well,” those at high familial risk, who may or may not have memory loss, a diagnosis of Alzheimer’s and other dementias and their caregivers who are eager to be partners in research and have their personal experiences validated. It attracts those who want to beta test new mobile technologies to help AD families, offers input into how research is conducted, and answer preference studies that inform the FDA.The goal is to use a collective voice to overcome scientific skepticism around the value of self-reported patient and caregiver information to inform and advance research.

The Health-eBrain Study, now in its second phase, seeks to create a mobile "mirror for caregivers whose own health and cognitive vitality is being compromised as they care for their loved ones.” The study will help caregivers by offering them feedback from their smart phones. This study also offers a virtual intervention for depression focused on supporting caregivers around their own emotional well-being and cognitive vitality.

UsAgainstAlzheimer's also leads engagement in the PCORI Alzheimer's Patient and Caregiver Research Network.

What can others do to be proactive and support Alzheimer’s research?

More than 50% of people with Alzheimer's disease go undiagnosed or the diagnosis comes too late. We don't know what triggers the disease once diagnosed, so if we take a step back and track asymptomatic patients, perhaps over time we can identify what changes occur and understand what triggers the disease. A family in denial can't help the person who is undiagnosed.

It is often said that people don’t want to participate in clinical trials because they don’t want to know if they have the disease, given that there is no cure. While I certainly can understand this, I constantly talk to others about how knowledge is power, and how there is no other way for science to progress. The biggest problem the drug companies face is that there are not enough volunteers that fit the parameters of the clinical trials, so ultimately the timing of the trial gets extended, thus delaying getting the drug to market. If we have a larger pool of volunteers, we could potentially move the needle forward, but we need your participation. I recommend participating in the Health-eBrain Study (which can be done from your computer or mobile phone), participating in the Alzheimer’s prevention registry and visiting Alzu.org for more information about clinical trials.

At UsAgainstAlzheimer’s we are trying to disrupt the conversation and talk beyond caregiving. Knowing that the first person cured of this disease will be in a clinical trial is what keeps this organization going. We are working on finding a means of prevention and cure by 2020.

How have you remained positive through your mother’s diagnosis and as her caregiver?

It is hard to remain positive when there currently is no treatment or cure for this devastating disease. My mother's situation will never be reversed. My children lost their grandmother 20 years too early and I lost my mother and best friend. Rather than focusing on the negative, I have focused my energies on living and enjoying every day. I appreciate any time spent with those I cherish the most, my family and friends. I have also flipped my pain into action and have become a fierce advocate, a tireless volunteer and a ready and willing clinical trial participant.

What has been your proudest moment with UsAgainstAlzheimer’s?

My work with UsAgainstAlzheimer’s and other organizations is what keeps me positive, knowing I am making a difference and doing so in honor of my mother. My proudest moment at UsAgainstAlzheimer’s in not one single moment but the many times each week we work toward clinical trial participation.

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