Forgotten but not gone

Around 83,000 people were living with dementia mate wareware in Aotearoa New Zealand in 2025, and that number is expected to rise to almost 170,000 by 2050. The statistics are daunting, but dementia is more than a set of numbers. Every diagnosis belongs to a person, and every journey is shared by a circle of people who love them.

How can we remove the stigma surrounding dementia, support earlier diagnosis and help people experiencing cognitive decline to continue living with dignity, connection and joy?

One family’s journey

Linda was naturally social. Her strengths lay in connecting with people, something reflected in her pastoral care work. Anyone who knew her would have noticed her energy, kindness and enthusiasm for others.

When her conversational skills and focus began to change, her daughter Jaclyn sensed something wasn’t right. Linda struggled with long conversations and sometimes wandered away partway through. At first this could appear rude, and those close to her also noticed changes to her usual social filters.

As an occupational therapist, Jaclyn was particularly alert to behavioural changes. She carried out a cognitive assessment, which raised concern, although Linda attributed the differences to a busy lifestyle and burnout. Jaclyn contacted her mother’s GP and explained that it wasn’t Linda’s memory troubling her most; it was her behaviour.

A psychologist suggested frontal lobe dementia, but a second opinion did not support that conclusion. As the changes became more noticeable, Jaclyn asked for a referral to Older Persons Mental Health Services. After 18 months of concern, Linda was finally diagnosed with frontal lobe dementia, based primarily on the changes in her behaviour.

When something doesn’t feel right

As in Linda’s case, it is often somebody close to the person who first notices a difference. Possible changes can include:
• Memory or language difficulties, such as forgetting or misusing words
• Trouble concentrating, planning or organising
• Difficulty recognising objects or managing familiar tasks
• Problems with coordination, such as doing up buttons
• Changes in mood, judgement or social behaviour

Experiencing one of these things does not necessarily mean somebody has dementia. However, if changes begin to accumulate or interfere with daily life, gently suggest a visit to the GP.

It can help to contact the GP before the appointment, book a longer consultation and bring a written list of specific changes or incidents. An early diagnosis gives the person and their whānau more time to understand what is happening, access support, plan for the future and make choices about how they would like to live.

Living well after a diagnosis

A diagnosis does not change who somebody is, and nothing has to alter immediately. For some people, talking with others who have already crossed this bridge can reduce anxiety and the feeling of being alone.

There is no single dementia journey and no single support arrangement that suits every family. Healthy habits such as regular physical activity, eating well, sleeping well, staying socially connected and keeping the brain active may help support brain health. Just as importantly, familiar routines, meaningful activities and time with other people can bring pleasure and connection to everyday life.

Finding care that fits

Choosing between support at home and residential care is deeply personal and can be influenced by health, safety, finances, culture and the help available from whānau and community.

Linda remained at home, with most of her day-to-day care provided by her husband. Following her diagnosis, she joined cooking and art gallery groups through Dementia Canterbury. However, the activities were not quite the right fit. Linda’s instinct was still to chat with people nearby, and she would wander away from the group to socialise. One-to-one support was recommended.

The family then sought a needs assessment so Linda could attend a secure day programme. Yet her age, physical fitness, type of dementia and lack of insight into her condition made it difficult to find a service that suited her. She was considered “not a good match”, highlighting a genuine gap for active, younger people whose dementia does not present in the way services expect.

Respite care was eventually arranged, although Linda managed to escape from the first facility by scaling the fence — twice. After several attempts, the family finally found somewhere suitable. In the meantime, kind friends stepped in and offered practical help where they could.

If residential care becomes the safest option, take time to research and visit several facilities. Ask what is distinctive about their dementia care, how staff are trained and supported, what levels of care are available, and how whānau can remain involved. Independent reviews on Aged Advisor can also offer valuable insight from residents, families, visitors and staff.

Unexpected silver linings

For Jaclyn, one comfort was that her mother appeared happy.

“Her expression was happy. She always smiled. She was sociable and didn’t understand what was happening to her, so she didn’t have that same stress and fear about what dementia was doing to her body.”

Even as abilities and circumstances changed, Linda’s warmth and desire to connect with people remained. She might forget the activity in front of her, but she had not lost the part of herself that drew her towards others.

A word of encouragement

Jaclyn’s strongest advice for families beginning this journey is to accept help.

“Accept offers of help from family and friends, and if you need help, ask for it. Be open to private carers if you have the finances, and don’t assume formal support will always be the right fit. Make sure you care for yourself and for those doing most of the caring. Respite can be emotionally hard, but you need time to restore yourself so you can continue caring for your loved one at home. And don’t make big life decisions in the midst of it.”

A dementia diagnosis brings uncertainty, grief and change, but it does not erase the person at the centre of it. With patience, practical support and people willing to walk alongside them, families can continue to find moments of laughter, love and genuine connection.

Where to find support

Mate Wareware provides information for whānau about living with mate wareware and caring for brain health across the lifespan.

Dementia New Zealand provides information, education and local support. Freephone 0800 433 636.

Carers New Zealand offers information, advice and resources for family and whānau carers. Freephone 0800 777 797.

Alzheimers New Zealand provides support, information and education for people living with dementia and their whānau. Freephone 0800 004 001.

This article was first published in New Zealand’s Best Magazine 2025 edition.