I’ve now been working as chaplain at Tamahere Eventide Home and Village for over a year and there is still lots to learn. The area of dementia care is one that I’ve found especially interesting and I’ve been helped by Wendy Mitchell’s remarkable memoir Somebody I Used to Know (2018).

Mitchell was diagnosed with young-onset dementia in 2014 at the age of 58. A highly organised single mum with a busy career, she became aware that things weren’t right two years before. Her head felt fuzzy and life was a little less sharp.

When it came, the diagnosis was devastating. Like others in her situation, Mitchell was told, “There’s nothing we can do, I’m afraid”, words which initially left her feeling helpless. Everything seemed so negative and scary and she describes her feelings of loss, fear and hopelessness.

What a difference it would have made, she observes, if her doctor had told her she had dementia but offered to put her in touch with people with the same diagnosis who could share tips and tricks and help her to adapt. “I would have had hope,” she says.

For Mitchell, using positive language is an essential means of empowering people. She suggests we don’t talk about people “suffering” from dementia, but rather people “living with” dementia. This change of perspective can help people to focus on what’s possible rather than what feels impossible.

Determined to stay active while she can, Mitchell got involved in the Alzheimer’s Society, travelling around England, speaking to groups, taking part in research projects and advocating for people with dementia. She sees this as a way of exercising her brain, exposing it to new conversations, people and surroundings.

Mitchell’s is an inspiring example, but it comes with a cost. She details the strategies and meticulous planning that’s necessary to stay one step ahead of the disease. She needs to be well-prepared every time she steps out of her front door. She knows dementia will ultimately win; it claims minor victories every day.

Somebody I Used to Know is a moving account of the dementia journey from the inside and it struck lots of chords with me. I loved Mitchell’s reminder to student nurses, that people living with dementia might not remember the detail of their care, but they would remember how it made them feel. They still know the language of love.

This has been my experience at Tamahere. There are some things our residents can no longer do without help, but they can still give and receive love and so - despite the odds - they can still live well. “Ko te mea nui ko te aroha”.