Silent plague that steals the mind

Sandie and Robert Turner sit next to each other in a cosy sunroom. Sandie doesn't speak: a gentle stroke of her husband's hand is her only movement.

Robert begins to talk about the last seven years. After a couple of minutes Sandie falls asleep, still holding his hand.

Does she know who Robert is? Where she is? Why she is here?

"Here" is Dominion Home, a specialist dementia care unit in Mt Roskill. At age 65, Sandie is in the advanced stages of dementia, one of more than 50,000 New Zealanders with the disease.

The numbers are frightening and the forecasts worse. In 2008, 40,746 New Zealanders had dementia. That's almost double the number of people diagnosed with cancer (20,317) in the same year.

The number of people with dementia is projected to reach 74,821 by 2026, and 146,699 by 2050. The financial cost of dementia in 2008 was estimated at almost $713 million.

Robert has been the rock in Sandie's life for almost 20 years. They met in 1993, and married two years later. Their life together was one of adventure, friends and travel.

Towards the end of 2004, Sandie - 12 years older than Robert - began to change. (Picture below shows Sandie in 2004, and as she is now.)

"We started to be emotionally distant and I couldn't figure out what was wrong," he recalls.

"She would buy stuff we didn't need, would play one song repetitively and loudly. She lost the ability to organise and cook a meal."

After a couple of years of Sandie's increasingly frustrating and unusual behaviour, the couple visited a psychologist in 2007. Sandie was diagnosed with fronto-temporal dementia.

Over the next year Robert cared for his wife at home and paid for extra nursing care. "It cost a fortune but I had just sold a business so that made it possible."

He was looking for a new business opportunity, but working from home became increasingly difficult as Sandie's behaviour became more challenging.

"There was one period of about six weeks when she refused to shower. She was up and down all night and took up smoking again. I was worried about her setting the house on fire or falling on the stairs. Even after she went into care it took me three months to get back into a normal sleep pattern."

With the support of Sandie's three adult daughters, Robert decided to move Sandie into full-time care. However, after a couple of months in a rest home Sandie wandered off the property one day. The family realised she needed to be in a specialised unit.

Dominion Home is a secure home with high fences and locked gates. Sandie has been here since 2009.

She lost her speech a couple of years ago, needs help with most simple tasks and is double incontinent. "It's likely she will eventually forget how to chew and swallow," says Robert.

Following Sandie's diagnosis, Robert got in touch with Alzheimers Auckland, a charitable trust providing information, training and support - most of it free - for people with dementia, their carers, family and friends.

"I needed advice on how to deal with the difficult situations. You don't know what it is and it's infuriating and enraging. I go to the Alzheimers support group and you can see that people there are at the end of their tether."

Robert says Alzheimers Auckland has taught him how to cope and what to expect as the disease progresses. He became a board member in 2010, and is now chairman. "I could see the value of their work. It was a chance to give something back and to try and provide that help to more people.

"From a lot of people I talk to, I can see that access to respite care is really important for them to keep their sanity. I could afford to pay for nursing help and I had the time available to care for Sandie myself, but not everyone can do this."

Last month the World Health Organisation and Alzheimer's Disease International released a report calling for dementia to become a global public health priority.

Age Concern North Shore executive officer Janferie Bryce-Chapman says there seems to be more intense focus on dementia.

The recent National Age Concern conference looked closely at the disease.

"Part of that discussion looked at the need for more training to be put in the hands of the informal carers like family members.

"There is a need for increased training for staff in residential facilities as well as home-based carers," she says.

"Everybody knows that the 80-plus age group is the fastest growing, and the percentage of people getting dementia and related issues after 80 increases greatly.

"People with dementia still have rights, so it's important we find the ways we can serve them best."

Alzheimers Auckland director of clinical practice and training Mary Lythe says that as New Zealand's elderly population grows, so does the urgent need to consider care for those with dementia.

"The tsunami is coming in New Zealand. There is going to be a huge increase, and until we get a cure or isolate the cause we have to cope with what is happening."

More variety in care is needed. "We're getting a lot more people with younger-onset, in their 50s or 60s, and they don't want to go in with the oldies so we need facilities for them. We need respite options for day, night and week as well as options for home-based respite."

The Government is pushing for home-based care but this often spells home detention for the partner doing the caring.

"They need outside support. We are the only ones that specialise in being the still point in their turning world," Mrs Lythe says.

Alzheimers Auckland offers a wrap-around service that includes free four-week education courses for those looking after a family member with dementia in the home.

"This teaches them about dementia and the brain, communication, behaviours that challenge and gives strategies to help them cope. It gives the carer a quality of life and it's empowering to find there are others in the same situation."

Because dementia is a progressive disease with no cure, care eventually needs to be 24/7. "And that's a huge burden," she says. "We often find that the carer spirals down in health faster than the person with dementia. Grieving lasts throughout the journey, and that can be 10 years or longer. It's a cruel syndrome."

Carers learn that a part of the brain in the person with dementia is dying, so they are not "being naughty" but are losing their capacity to do things.

The charity also provides activity groups that help the person with dementia get used to being outside of the home with other people, and prepares them for specialised care.

The National Dementia Co-operative was launched last year by professionals in the area with an interest in improving the quality of life for people with dementia and their carers.

Members volunteer their time but five organisations have paid to employ Marja Steur as co-ordinator. She has spent more than 20 years as a speech-language therapist and project manager for disability and mental health groups, and says the increasing prevalence of dementia, as highlighted by the 2008 Dementia Economic Impact Report, prompted creation of the co-operative.

"We know that resources are tight so we thought we need to co-ordinate to make the most of what we do have."

The group intends to host meetings around the country, allowing those working in the field to share local developments.

Dozens of people have volunteered to contribute to action groups which will focus on six issues: workforce, information sharing, research, informal carers, advocacy and dementia care pathways.

"We're still looking for people with a variety of different backgrounds who may have something to contribute to the discussion. The Alzheimers conference is coming up [this month] so a lot of people who have an interest in dementia will be there, and that will be an opportunity to get the action groups together," Ms Steur says.

The co-operative seeks to encourage specialised training for service providers, influence national policy development and promote a level of excellence in dementia care.

Now living on Waiheke Island, Robert runs a media business and visits Sandie regularly. "Somebody said to me once that my life is like a movie and Sandie dies in every scene. I think about how she was and how we were, and it's a huge sense of loss."

A Slow Decline

Dementia occurs because of physical changes in the brain that affect memory, thinking, behaviour and emotion. The most common forms are Alzheimer's and vascular dementia.

Dementia is not a normal part of ageing. People can live for many years after the onset of symptoms.

It is likely that a combination of factors, including age, genetic inheritance and environmental factors, is responsible for Alzheimer's.

People who smoke or have high blood pressure, high levels of fats in their blood or diabetes are at risk of developing vascular dementia.

People of any ethnicity and intellectual ability can get dementia.

Alzheimers NZ provides information and support.email nationaloffice@alzheimers.org.nz or see www.alzheimers.co.nz. Freephone 0800 004 001, 24-hour information line (09) 634 6205

Leave us a comment in the box below or on our Facebook page or email letters@theaucklander.co.nz