Patchwork of Care : Living the Reality of Dementia Caregiving

I did not set out to write a book about dementia. Like many people, I believed I understood what Alzheimer’s disease looked like: quiet forgetfulness, gentle confusion, a gradual and peaceful fading. I thought it would be sad but manageable, dignified and recognisable.

I was wrong.

Dementia did begin as a softening of memory, but it did not remain gentle. It became disruption, fear, and relentless uncertainty. Our days were shaped by agitation and sudden shifts in mood, by confusion that could turn to anger or suspicion without warning. 

The person I loved was still there, yet increasingly unreachable, often frightened by a world that no longer made sense. What unsettled me most was how unprepared everyone seemed to be, including me. The public image of dementia bore little resemblance to daily life at home. Support existed in theory, but in practice it was fragmented and often ill-suited to what was truly needed.

This is not a medical guide.

It is a record of dementia as it was lived – confusing, frightening, and exhausting. Above all, it is an attempt to replace comforting myths with something more honest. Until we face the reality, families will continue to endure it largely unseen.