This Carers Week, Lewy Body Society ambassador Karen Young shares her experience of becoming a carer for her husband Alan, a former chartered civil engineer originally from North Birmingham and now living in Sheffield 

“For over forty years, Alan has and will continue to be my best friend and soul mate. With our children grown up, we planned adventures, to grow old disgracefully, maybe going interrailing around Europe with our backpacks, living life spontaneously.

“However, our life went in a different direction when in 2019, Alan received a diagnosis of Parkinson’s Disease, which explained a lot of the changes in Alan, but did not explain his cognitive decline, that was until 2022 when he was diagnosed with Lewy body dementia. 

“Seeing the wonderful, intelligent, articulate, easy-going man I love who gives amazing hugs with his cheeky smile change and deteriorate both cognitively and physically as his brain dies is heartbreaking.

“Being a caregiver is a journey of unconditional love and continual adjustment. Each day brings new challenges, some expected, many unforeseen. We are on this road of dementia, where there is no clear road map. 

“Dementia means much more than simply managing Alan’s daily needs, it is a profound emotional, mental, and physical commitment that requires patience, love, and resilience, sometimes of which I find is in short supply. A commitment to do things better the next day and to say sorry is important. 

“Dementia gradually changes the person you love, altering their memory, personality, and ability to communicate. I find I must continuously adapt, find new ways to support him whilst coping with my own grief and loss. 

“As his needs increase, our life becomes harder and our world becomes increasingly smaller. The emotional toll is significant, loneliness, sadness, and an uncertain future feel overwhelming and sometimes too much. 

“Resourcefulness has become second nature, whilst I constantly adapt to the shifting needs. To navigate this journey, I have learnt to embrace experiences, seek solutions, educate myself about dementia, seek out support and discover new ways of doing things. 

“Witnessing the challenges of Lewy body dementia firsthand, I felt compelled to raise awareness and support others facing similar experiences.

Educating clinicians

“I am dedicated to educating clinicians on the unique challenges faced by carers. I focus on promoting the importance of accurate diagnostic tools. This is crucial because early and correct diagnosis can significantly impact the quality of life for patients and their families.

“Caring for a loved one with Lewy body dementia involves navigating a complex landscape of cognitive, motor, and behavioural symptoms. By sharing my personal experiences, I want to enhance the understanding and empathy of healthcare professionals, ultimately improving the support for both patients and carers.

“I have organised community outreach programmes and spoken at medical conferences to advocate for better diagnostic practices. My goals are to continue expanding educational initiatives for clinicians and to develop support networks for carers, ensuring that no one has to face this journey alone.

“I am a warrior and will always fight for Alan to ensure he has the best quality of life. I remain thankful for the love of our children, our wider family, organisations like the Lewy Body Society, Parkinson’s UK, Rare Dementia Society, Carers Resilience and the NHS Memory Service in Rotherham, Professor Rimona Weil who is a member of The Lewy Body Society Specialist Advisory Committee, and the warmth, solidarity and friendship of our Walking the Talk family.

“Connecting with caregiver groups, seeking professional help, and taking breaks can all prevent burnout. Small victories matter; remaining thankful, treasuring the moment, the love of children, grandchildren, family and friends, and laughter all bring moments of joy.

“Caring for a spouse with dementia is an act of deep love and devotion. Cherishing moments of connection, such as a shared smile or memory, brings comfort. I remain committed to providing dignity, understanding, and companionship through every stage, to ensure Alan feels safe, valued, and loved, even when words and memories fade.”

If you are caring for someone with Lewy body dementia, Carers UK and Carers Trust can offer advice and support.