Dementia at age 36: Oamaru woman talks of sister’s frontotemporal dementia diagnosis

It was described in an episode of US TV news show 60 Minutes as “the worst disease you have never heard of”, and frontotemporal dementia is now a disease the Banks family, of Alexandra, can only wish they had indeed never heard of. Oamaru reporter Ashley Smyth writes about her younger sister, Jenny Banks, and her devastating diagnosis less than two years ago.

They call the very early signs of dementia “insidious onset”, and when I first heard that term, it seemed so apt. This disease, which is rapidly stealing away the essence of my little sister, is indeed insidious.

Jennifer Ann Elizabeth Banks, my beautiful, talented, kind-hearted, gentle sister, has early onset dementia — an umbrella term given to the disease when it develops in people under 65. Except Jenny is much much younger than 65. She has just turned 38, and was only 36 when she was diagnosed.

Jenny was, and still is, a talented musician. She started learning Suzuki method violin from the age of 4.

She had a natural ability, could play a tune by ear and, most importantly, she practised. All. The. Time. This is where my other two siblings and I eventually fell short in the music department.

Jenny’s violin playing took her all over the world. After completing an honours degree in violin performance at the University of Otago, she gained her master’s at Boston University and then joined the Tasman Quartet, the “quartet in residence” at Colorado University.

Once the quartet disbanded, she moved to Germany, where she lived for eight years until April last year, having been made a tenured member of Leipzig’s Gewundhaus Orchestra in 2014.

In a 2014 interview with the Otago Daily Times, she described being paid to do what she loved as a “real privilege”.

“There’s a real sense of pride in this orchestra, about its history and where it’s come from,” she said at the time.

She met her partner, Lukas Olszewski, and in 2015, their precious baby Ella came along.

When Ella was about 3, Jenny and Lukas separated. At the time, my sister spoke to me about problems they were having in their relationship, and it seemed like the right decision for her.

In hindsight, I had only heard her side of the story, and Lukas was possibly already having to deal with early changes in Jenny’s behaviour — the insidious onset — which were so subtle even he could not quite put his finger on what it was that wasn’t right.

Nele Kemmerich, head of the Orchestra Academy (Orchesterakademie) and assistant to the orchestra manager, was one of Jenny’s close friends in Germany.

The two had met in 2011, when Jenny first began playing with Gewundhaus on a fixed-term contract.

“I met a funny, interested, open-minded woman … who I learned I could rely on as a friend, no matter what,” she said.

Nele had a son 3 months older than Ella, so the two also spent a lot of time together on maternity leave, and supported each other in the early days of motherhood.

“She was always such an intuitive, loving, great mum.”

In July 2019, my family and I, along with my parents Judy and Tony Banks, met up with Jenny and Ella near Port Douglas, in Australia. Jenny had wanted some warm weather before spending her German summer break in what was a New Zealand winter, and we thought it was the perfect excuse for a family holiday.

It was a difficult holiday. I can’t speak for my parents’ experience, but for me it was memorable for all the wrong reasons, and a lot of them were to do with Jenny and her behaviour.

She showed little consideration for others, was reluctant to spend money and there was a lack of empathy, which I had not seen in her before.

She was strangely critical of my parents — I remember her one time telling Mum off for not doing enough for the environment (my parents waste nothing, drive an electric car and separated their paper from their plastics long before it was a thing). She told us we ate too much meat at dinnertime — and then would eat the same meat herself.

There was one occasion when we had all been out for dinner in Port Douglas, and afterwards Jenny was crossing the road with 4-year-old Ella following behind.

Ella fell and grazed her knee and afterwards, at a shop nearby, the woman behind the counter patched Ella up and gave her an ice cream.

The next day Mum suggested we all go back to the shop and repay the woman’s kindness by buying ice creams for everyone, but Jenny said no, she wasn’t paying $5 for an ice cream.

She was always the last up in the morning and the last one ready to walk out the door, but was never in a rush. This was not totally out of character for her — she had always operated a wee bit on “Jenny time” — but for me, that holiday felt almost like all Jenny’s small annoying habits were on steroids.

Jenny’s German friends also noticed changes in her behaviour when she returned from New Zealand that September.

Jenny stopped calling in to Nele’s office at work to chat, and seemed uninterested and distracted when they did spend time together, often repeating the same stories.

Then Covid-19 hit Europe and everything was locked down in March. Jenny did not understand.

“This intelligent, interested woman, who normally was informed about everything happening in Europe, the US and New Zealand, suddenly had no idea about corona, didn’t understand the rules, and kept talking about her latest pop band discoveries,” Nele said.

She would try to get her friends to go nightclubbing with her, and did not believe them when they said the clubs were shut.

It was a mutual doctor friend who urged them to get her seen by a professional — he suspected she maybe had a brain tumour or encephalitis.

Her friends, who we will forever be grateful to, took her from doctor to doctor until they received the terrible diagnosis. Jenny had frontotemporal dementia (behavioural variant) or bv-FTD. The other FTD variants fall under the category of primary progressive aphasia, and affect the language and speech part of the brain.

The behavioural variant is distinguishable by a lack of motivation, apathy, loss of sympathy or empathy for others and overeating. Sufferers also lack insight into their own illness.

Nele said that after the diagnosis, Jenny still did not think there was anything wrong with her. She cried on two occasions that Nele saw, saying if the diagnosis was real, her brain would “turn to mush” and her life would be ruined.

It is a small comfort to us all that as far as we can tell, Jenny is still unaware of what is happening to her.

The lockdown had been “a blessing and a curse”, Nele said.

If it hadn’t happened, Jenny’s friends may not have noticed the changes in her so quickly, or felt such a need to do something about it, but at the same time, losing her day-to-day routine seemed to accelerate her decline.

“At some point, we started taking her out for walks, started cleaning her apartment and checking her mail.”

Because the orchestra was also in lockdown, and then it was the summer break again, they managed to delay informing her employers for as long as possible, Nele said.

When it could no longer be avoided, her employers were very supportive, and just asked to be kept informed.

“As a player she was just wonderful and very, very much respected. She was a musician by all her heart, and she is missed by everyone,” Nele said.

Back in New Zealand, our older sister Carolyn, brother Alistair and I did not understand what was going on. Jenny’s friends had told my parents there was a problem, but until she was diagnosed, they had not shared any of their concerns with us.

Carolyn and I were incredulous about Jenny’s nonsensical messages about Covid. She seemed ignorant of what was happening — and unconcerned about what was going on in New Zealand, which was extremely out of character for her.

Once we received the diagnosis we were all in shock, but it explained so much.

My father said when he first heard about Jenny’s diagnosis, he thought Germany was the right place for her and that the doctors over there would be able to help “sort it out”.

But my parents still wanted to get over there as soon as possible.

Because of Covid restrictions, they had to secure a spot in managed isolation in New Zealand before leaving the country, and as soon as they could, they were on a plane over there.

When they arrived, Dad thought Jenny was acting “a bit strange”, but that her behaviour could be corrected.

Then they met a German medical professor who clearly spelt out to them Jenny’s bleak prognosis. The estimated life expectancy from diagnosis could range from two to 10 years. The average was eight.

“He said there was no known cure, and she will only deteriorate,” Dad said.

“I was devastated.

“How could this happen to a brilliant musician, with a sparkling personality, who was our loving daughter, and with her own sparkling 5-year-old daughter, whom she loved — and still does?”

They stayed six weeks with Jenny, and it was challenging. She listened to loud music and danced a lot, oblivious to how it affected other people.

She was always eating, even through the night, and when she was not eating, she wanted to go on kilometres-long walks around Leipzig.

When my parents returned home, it was decided that while Jenny was still able to care for herself, and safety was not an issue, she was better off staying in Germany.

Her friends and Lukas assured us they were happy to care for her.

Jenny had her car and then her bike taken away, because she paid no attention to traffic.

Ella eventually began living with Lukas permanently — which Jenny appeared ambivalent about — although they all still spent a lot of time together.

When Germany was plunged into a second lockdown in December 2020, Jenny deteriorated further. The last phone message I received from her was a few days before her 37th birthday on December 16, because she stopped using her phone.

Once she stopped replying to any form of communication, the decision was made that she needed to come home.

If only it had been that easy.

Getting Jenny home became an all-consuming mission. The borders were completely closed, except for emergencies, so we needed to prove this was an emergency. Then she could not come home on her own, so either somebody in Germany needed to bring her, or somebody from New Zealand needed to fly over and get her.

We were reluctant for our ageing parents to return to Germany so soon, especially while Covid was rampant, and the long-distance travel was hard on them, but getting a border exemption for somebody to bring Jenny home also seemed like an impossible task.

We were all grateful when Carolyn took on the paperwork and organisation of Jenny’s homecoming.

In what was the best-case scenario within a worst-case scenario, she managed to get an emergency spot in quarantine for Jenny and Ella, as New Zealand citizens, and for Lukas as their caregiver under “critical circumstances”. They all made it here just before Easter last year.

The relief of having Jenny home was short-lived.

She would hit out, without warning, and we were all subject to a good whack on the back on occasion, including our children and Ella.

It felt to me like it was only a matter of time before somebody got hurt. Finding help and advice on the right treatment for her was to be the next mammoth task.

Because of her age, our family GP received knock-backs wherever he went for assistance, and the waiting lists for psychologists, neurologists and assessors were long.

Eventually, it was Jenny herself who got hurt.

One frosty morning just after Easter, she slipped and badly broke her leg, just above the ankle. Her tibia and fibula were both displaced, and she needed surgery to insert a rod down one bone and attach a plate and screws to the other.

She spent a week in Dunedin Hospital before they could operate, due to the swelling. She would forget she had a broken leg, and go to get up and then cry out in pain. She would use the bedpan frequently — day and night, whether she needed it or not. She loved playing with the controls which levered her bed up and down, and she wanted the curtains closed all day, because she did not have sunblock or her sunhat on.

My mother and father were with her all day, every day, and my mother stayed every night. I spent one night with Jenny to give Mum a break and it was exhausting. That night my heart broke for my mother with the realisation of what she had been going through that week. My heart also broke for Jenny and what she had lost.

Since then, Jenny has not been able to return home.

While in hospital the specialists were able to see Jenny’s situation for themselves.

Once she was able to use a walking frame, she was placed at Ripponburn Home and Hospital, near Cromwell, until she could walk properly again.

But it was soon obvious her boisterous behaviour was out of place in a facility where residents are primarily aged and frail.

Since then she has been in ward 6C, the psychogeriatric ward, at Dunedin Public Hospital.

It is not a long-term solution, but for now it’s the best and only solution.

One piece of advice Dad has been given, and tries to live by, is “don’t look past the headlights”. It makes dealing with the day-to-day more manageable.

Mum and Dad visit Jenny every week. It’s a five-hour round trip from Alexandra. Alistair and I also visit when we can, from Alexandra and Oamaru. Carolyn lives further away, in Wellington, and wishes she was closer but also visits when she can.

An amazing lifelong friend of Jenny’s from school, who lives in Dunedin, does her laundry every week.

We still get glimpses of the old Jenny. She still knows who we are, and she is always happy to see us, offering lots of hugs and kisses.

She has a favourite song she plays on the piano, so fast and without looking — but she can’t remember its name — and she was sight-reading Christmas carols and playing them on the piano too last time I visited.

She can still play excerpts of Vivaldi’s Four Seasons or a Bach partita on her violin, but she often does not finish.

My mother Judy said when you dared to consider bad things that might happen to your children, you maybe thought of car accidents, or cancer …

“Never in a million years would you come up with FTD.

“We still love what we have left of her — so much … but her life is so limited now.”

Lukas and Ella are visiting again from Germany, and we spent Christmas with them. They were lucky enough to secure a highly sought-after spot in the MIQ lottery, and they have been spending as much time with Jenny as they can before they have to go back to Germany again.

We don’t know what happens next for Jenny, but as Dad said: “That’s looking past the headlights”.

University of Auckland Centre for Brain Research research fellow Dr Brigid Ryan said although the risk of developing dementia increased with age, a significant proportion of people with dementia, about 7%, were under the age of 65.

People and families living with dementia under the age of 65 faced very different challenges from those over 65, she said.

“We’re not currently doing enough to support these people — for example, age-appropriate support groups, respite care, residential care and financial support.”

Because FTD could cause changes in behaviour that made people act in anti-social ways, greater awareness in the general public would be helpful to people living with FTD and their families.

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