The Impact of Alzheimer's Disease: Caregiving, Hope and Advocacy

Trevor is an Alzheimer’s disease (AD) advocate who lives in North London. In 2013, his wife Yvonne was diagnosed with AD; she was 57 years old. Now, he is a tireless advocate for the rights of people with AD and dementia and the caregivers who support them. 

The night Trevor met his wife Yvonne he was manning the door at a popular social club he ran. The venue was full that night, as was often the case, so Trevor had to turn people away, he recalled. 

“This very effervescent ginger-haired lady turned up, and I remember saying, ‘I'm really sorry, we're full.’” But Yvonne refused to take “no” for an answer, Trevor said, so he let her in. That was the start of their relationship. 

Trevor and Yvonne were married and had two children. Yvonne was a very creative person who loved to cook and garden, Trevor explained. “We were a team. We may have been husband and wife, but we did everything as a team.” 

In 2009, Trevor started noticing changes in Yvonne’s personality. He remembers the day very clearly when the family realized something was wrong. He, Yvonne and their children were sitting around the kitchen table talking about their family trip to the coast the day before. “Yvonne was not only quiet, but she also seemed totally disengaged. Eventually she joined in the conversation with a single question: ‘Why didn't I come with you?’” She had no recollection of the previous 24 hours, Trevor said. She was 53 years old. Four years later, Yvonne was diagnosed with younger-onset Alzheimer's disease.

Trevor’s father had AD, so he knew very well the difficulties ahead for his wife and their family. Strangely, Yvonne's disease progression mirrored that of his father’s, which started with short-term memory loss and repetition, followed by paranoia.  

Their road to a diagnosis took four years. Yvonne refused to see a doctor at first, insisting that there was nothing wrong with her. When she finally agreed to go to a memory clinic for evaluation, she was misdiagnosed. 

Trevor watched Yvonne’s capabilities diminish. Eventually, basic tasks like using the oven, washing machine and dishwasher were too much. The disease also changed her personality from loving, funny and kind to frequently paranoid, frustrated and angry. She also experienced hallucinations, which is a rarer symptom of AD. Trevor left his job as an international marketing director to care for her. 

“The worst thing about AD is the persona change. The person that you love and married is no longer that person. They're morphing into someone that you barely recognize,” Trevor said. “And to see somebody totally competent, my wife could do anything, become totally incapable is just devastating.”

“Embrace and Disclose” 

Trevor cared for Yvonne at home for many years until her disease worsened, and it was clear she needed around-the-clock care. The family discussed their options and agreed that a care home would be the best choice. “Yvonne settled in there brilliantly,” he said. “On the day she went in, I felt a degree of guilt because I felt relief, but then I became quite traumatized for a couple of days after that; the impact of what had happened to all of us hit me quite hard.” 

Today, Trevor devotes most of his time to raising awareness about dementia and AD by telling his family’s story. His advice to those who are noticing that a loved one is not acting themselves: “Do not delay diagnosis, get to the doctor and bang on the door. Do not hide behind it; do not ignore it.”  He emphasizes that you need the diagnosis so that you know what the problem is and you can access the system of support. 

The simple phrase he learned from the UK Alzheimer's Society is “Embrace and Disclose.” 

“Don't be afraid of embracing the fact that somebody has a diagnosis because you can't be in denial; you have to live with it and tell everybody who needs to know. Your friends will support you if they're good friends.” 

Hope for the Future

Trevor draws strength from his advocacy work and is encouraged by the developments in diagnosing and treating AD. He believes it is important to share his family’s painful story and the details of Yvonne’s cognitive decline so that people really understand what AD can do to you. 

He cites the recent blood-based biomarkers test approval, and better AD awareness and education as all very positive steps forward since Yvonne’s diagnosis.  

“I’m excited about where we are now compared to where we were not long ago," he explained. "Maybe we are on the cusp of identifying the disease earlier to get people into treatment routines. The one word I’m hearing that I never heard before was hope. At last, there is a degree of hope for people living with this disease and for their carers.”