The Early Signs of Dementia Mate Wareware – What I Wish I’d Known Sooner

A Story On Diagnosis, Family Impact & Support

“I used to think dementia was only about memory loss“

Not all dementia journeys begin with obvious memory loss. Roger talks about what he wishes he’d known sooner, from spotting small behaviour changes to understanding how important it is to ask for help.

Roger’s story shows the challenges many people face when a loved one is diagnosed with dementia mate wareware. For Roger and Marie, they came as a surprise, and they dismissed them as other, less permanent things.

We listened as he shared their journey from the first signs and diagnosis, to changes in relationships and safety. And eventually, life got better once they found the right support.

Dementia brings many changes, but you don’t have to go through them alone.

If you notice changes in someone you care about, like confusion, withdrawal, or trouble making everyday decisions, you might be wondering what to do next. Roger’s reflections may help other families notice when something isn’t quite right, and he hopes that by sharing, others may find comfort in hearing his experience.

When the changes first began

February 27 was Roger and Marie’s wedding anniversary.
But this year, Marie didn’t remember.

Ten years earlier, they stood together with their adult children, grandchildren, friends, extended family, and church community. The day was bright, roses were blooming, and their children shared heartfelt readings. Everyone celebrated as Roger and Marie joined their lives, bringing new friendships and grandchildren into the family. They promised to care for each other in sickness and in health. It was a truly beautiful day.

‘The first few years went well, and we were happy. We settled into a new city, became part of the community and had some good times travelling overseas. But after a while my kids started to feel uneasy. At first I didn’t pay any attention.’

After a few years, Marie began to make decisions that didn’t seem like her. Some felt dishonest and completely out of character. No one really knew how to talk about it, but everyone sensed something was wrong.

At the time, everyone thought this was just a more difficult side of her personality.

Strain on family relationships

Tensions grew as Marie’s interactions with Roger’s children and grandchildren changed. There were moments of upset. It was hard to connect this behaviour with the warm, family-focused woman they knew. Still, no one wanted to raise concerns with Roger, Marie, or her children.

One situation caused a deep rift.

‘Two of my children were working on a business opportunity. The plans were in place, money invested, and everything was nearly ready for opening day. Then one morning, Marie woke up convinced it was a scam. She demanded we get our money back right away and nothing would change her mind. It was a major. Because half of the money we’d put in, was hers and I couldn’t top up what she wanted to take back, I had no choice but to back out with her. The business collapsed before it even began. They’d left their jobs and put their savings into it already so faced real financial hardship.’

Why was there such a sudden change? Was there something else going on that nobody had noticed? It was confusing and painful for everyone involved.

Life went on, but some strain remained. One summer, Roger suggested spending Christmas with his children and grandchildren instead of traveling to Marie’s family as usual. His children tried their best to include her and help her feel at home.

But Marie couldn’t enjoy the celebrations. She found fault with small things, got irritated easily, and pulled away from the joy around her. It took a lot of effort to get her out of her room to join them. At the time, everyone thought this was just a more difficult side of her personality.

…along with not wanting to socialise, she stopped driving, lost interest in her garden, and became hesitant to leave the house.

What Roger wishes he’d known sooner

As time went on, other changes became harder to ignore, but it took a while before anyone thought of dementia.

‘It wasn’t just forgetfulness. There were more subtle changes, in judgement, her anxiety, trouble managing money and bills, pulling out of activities she’d always loved, and the tension in relationships which were often for reasons I couldn’t see.’

And at the time, it was easy to explain these things away.

Stress.
Age.
Personality differences.

It was only later that patterns would make sense.

He wishes he’d asked for help sooner or had heard someone else share about the less obvious signs of dementia.

It’s also important to talk to friends and family about how you’re feeling, no matter how hard it is to reach out.

There were more subtle changes, in judgement, her anxiety, trouble managing money and bills, pulling out of activities she’d always loved, and the tension in relationships which were often for reasons I couldn’t see.

The subtle signs

One day, for no clear reason, Marie stopped going to church and hosting Bible studies, which had been a big part of her daily life. She didn’t want to socialise anymore, and their conversations at home changed. They talked more about her late husband and her earlier years than about what was happening now.

Roger and Marie found it both funny and frustrating that their conversations became multilingual, even though Roger spoke only one language. Marie speaks two languages and sometimes starts in one and switches to the other, without noticing.

Eventually, along with not wanting to socialise, she stopped driving, lost interest in her garden, and became hesitant to leave the house.

…if he wasn’t sitting in the same room, sometimes she would forget they had remarried…

When Roger and Marie had Covid, some of her friends kindly dropped meals at the door, but they were only for Marie, which surprised Roger. Looking back, he realises there were days when he didn’t fully exist in her world and wasn’t mentioned in her phone conversations. Later, he realised that if he wasn’t in the same room, sometimes she would forget they had remarried.

‘I realise now that her memories were slipping back to before we’d met. Some days she refused to walk without help so I took her to the doctor. They couldn’t find anything wrong but we started to check everything like her eyes, ears and anything lingering from when she was sick with Covid. She was always wanting to sleep too’

When she insisted on having a walking frame, even the doctor was surprised because she had always been active, was fairly young, and had no clear reason to need one.

They helped him with the next steps, too, like organising a Power of Attorney.

Getting a diagnosis

After many difficult appointments and conversations, Marie was finally diagnosed with dementia. Roger was both relieved and sad.

By the time they told their wider family about Marie’s health, they already knew what Roger was thinking and the GP had connected him with a care team. They helped him with the next steps, too, like organising a Power of Attorney.

There were new and unexpected challenges, though.

‘Confirming a diagnosis with her kids was hard. I had my daughter travel to help me talk to them about it. We’d been through something similar before when my mother was diagnosed with dementia 30 odd years ago but this was different and they didn’t know dementia like we had. I knew they’d need some time to process everything and I needed her support too so we called a family meeting.’

The doctors had also given them some graphs and information that clearly mapped out the stages they expected to see over the coming months and years.

Roger suggests always having someone with you who can help remember important details when you’re feeling emotional. If that’s not possible, call them straight away and leave appointments with clear notes to refer to later.

One of the difficulties with Marie’s dementia was that, on the surface, she often seemed fine.

Living with dementia day-to-day

Looking back, Roger sees that dementia had been affecting their lives long before anyone named it. Sharing the news with family wasn’t easy either, but open and honest conversations helped.

Marie’s children had a harder time accepting the diagnosis. No one in Marie’s family had ever been diagnosed with dementia, so they had no context. Living far away also meant they hadn’t seen the daily confusion or gradual changes. Marie had always been involved with the grandchildren, and everyone was used to her staying during school holidays to spend time with them and help care for them.

Being told she might forget names, could no longer drive, and that it wasn’t safe to travel alone wasn’t just something they had to process – it would impact their lives too.

In the early days after her diagnosis, Roger made sure he took Marie to visit her family more often. Family connection was important to everyone, no matter the distance. This brought new challenges, though, as he wouldn’t always stay for the whole time. It soon became clear that Marie was often left alone with the grandchildren while her adult children were at work.

At times, she would panic and call Roger in the middle of the night, asking when he was coming to collect her. Travelling anywhere became extremely upsetting for Marie.

One challenge with Marie’s dementia was that, on the surface, she often seemed fine. She could go long periods without showing any signs that something was wrong. To her children and others who didn’t see her often, she still looked like herself.

They helped her log back into social media, hoping it would give her some independence and connection. She became vulnerable to serious scams, which uncovered previous fraudulent activity she had been a victim of. This became a turning point in helping the wider family understand the impact of her condition. Having outside input was helpful in this situation.

Roger booked a doctor’s visit and organised for her doctor and a nurse to video family members.

Support can make the journey feel less lonely

After discovering that Marie’s online access had been given back to her, Roger booked a doctor’s visit and arranged for the doctor and a nurse to join a video call with family members, who helped reinforce safety considerations for Marie. Roger encourages others to seek advice earlier if something doesn’t feel quite right, even if that means an initial trip to your doctor alone.

Having trusted people by their side has made a real difference, not just for Marie, but for Roger and the whole family too.

Support when it’s needed can help older adults stay connected to their communities, maintain independence for longer, and feel safe as their needs change. But it can also help make sure that family members have practical guidance and reassurance as they adjust.

What support looks like for them today

A few close friends have also supported them every step of the way.

Today, Marie gets daily help from a support worker who assists with showering, dressing, and other personal tasks. Roger says Marie’s support person feels like part of their extended family. The support worker also stays with Marie if Roger needs to run errands like picking up groceries. Marie can no longer go out in public without someone who can give her full attention.

Marie’s dementia tends to progress in stages. Weeks or months might go by with little change, then suddenly Roger notices a big shift.

Marie has needed 24 hour support to remain independent at home for some time now. So, together with family and support services, Roger is beginning to consider what new living arrangements might best support Marie’s well-being and safety, as well as his own limitations.

She had forgotten the date, the wedding, and even why anniversaries are celebrated.

You are not alone

On their anniversary, Roger still woke Marie with roses and a cooked breakfast. She had forgotten the date, the wedding, and even the reason for celebrating anniversaries.

‘But this is life now. Tomorrow is always a new day.
In sickness and in health.’

Dementia changes many things, but you don’t have to face those changes alone.

With the right support, older adults can continue to experience connection, purpose and care, and families can feel more confident about the path ahead.

If you notice changes in someone you love, like confusion, withdrawal, or trouble managing daily decisions, you might wonder what to do next.

Support at the right time can make a real difference for both older adults and the people who care about them.

Equip Older Adults Community Support works alongside individuals and families to help maintain safety, connection, wellbeing and practical care.

Reaching out early can help make the road ahead feel easier to manage.

If Roger and Marie’s story feels familiar, Equip Older Adults Community Support can help.

Support might include:

• Help to remain safely at home
• Guidance when transitioning to new living arrangements
• Strengthening friendships and community connection
• Coordinating with other services involved in care
• Supporting family and friends through changing circumstances
• Optional spiritual support for those who value it

How to access Equip Older Adults Service

Available on the North Shore, Rodney, Central Auckland and Counties districts, access to this service is via the Co-ordination Service at:

Te Whatu Ora Waitematā
Counties Manukau, or
Te Toka Tumai Older Adults services

If you would like further information, please contact the Older Adults Community Support Work Team.

OAreferrals@equip.net.nz
09 477 0338