ALZ Annual Report 2013

Auckland

2013

ANNUAL REPORT For the year ended 30 June 2013

Alzheimers Auckland helps people living with dementia to make the most of life.

ALZHEIMERS AUCKLAND | ANNUAL REPORT

THIS IS THE STORY FROM THE

Chairman and General Manger We strongly believe that with the right support, improved environments and connections to the community, people with dementia can continue to make the most of each moment. Our team of highly skilled and experienced health professionals are out there on a day to day basis providing programmes and support services that help to relieve the stress and anxiety for people living with dementia and their carers and families.

It is with much pleasure that we present this report highlighting the activities of Alzheimers Auckland Charitable Trust (AACT) over 2012/13.

With our new General Manager on board in September 2012 the board and leadership team held a Strategic Planning session taking into account that dementia is fast becoming an “epidemic� with the economic predictors estimating that the number of people with dementia will double in twenty years and then double again due to the ageing population.

A new service was introduced in South Auckland thanks to Counties Manukau District Health Board, to provide respite for carers through an innovative community based socialisation service for people with dementia.

Over this past year we have built a multidisciplinary team of passionate health professionals who on a day to day basis provide education, support and guidance to enrich the lives of individuals, families, carers and communities affected by dementia. We are directly supporting over 1400 people and expect these numbers to grow significantly for 2014.

We have been receiving exceptional feedback from this initiative and further information is detailed later in this Report.

We have worked closely with community groups, health professionals and agencies so they too can support people affected by dementia to live well and enjoy quality of life. This has included working with the three District Health Boards across metropolitan Auckland as they develop their dementia pathways, to ensure the voices of the people affected by dementia are heard.

These figures invigorated AACT to not only set some aspirational goals for the organisation but to redirect our messages to inspire, give hope and support people to live well with dementia. This has meant not only changing the way our services are delivered but it also meant changing the face of the organisation to ensure it is well positioned to advocate, support and lead the charge to dispel the fear factor of dementia.

We have broadened our reach to the public in an endeavour to reduce the stigma and minimise the fear associated with dementia. We have reminded people that dementia is not a normal 1

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with grants enabling us to continue to provide the much needed and appreciated services for people affected by dementia.

part of ageing; that it affects people from all demographics in their 40’s 50’s and 60’s not just older people. People come away from the public talks with the names of people they can contact for further information, advice and support.

Our thanks extend to Auckland, Waitemata and Counties Manukau District Health Boards for their ongoing funding and support.

A heartfelt thanks goes to our key partners – Countdown, Parnell Rotary, Freemasons Roskill Foundation – we could not achieve what we do without your support. You inspire us to make the most of every dollar you fundraise and reach out to the ever increasing numbers of people affected by dementia. We also thank the many organisations and foundations who support us

As we look into the next year we are confident that Alzheimers Auckland has a team of competent, confident staff to continue to deliver services and make a difference to the lives of those increasing numbers of people affected by dementia.

Robert Turner, Chairperson

Julie Martin, General Manager

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“Every time I read to her, it was like I was courting her, because sometimes, just sometimes, she would fall in love with me again, just like she had a long time ago. And that’s the most wonderful feeling in the world. How many people are ever given that chance? To have someone you love fall in love with you over and over?”

- Nicholas Sparks, The Wedding

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This is the story from the Chairman and General Manger

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What is dementia?

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Alzheimers Auckland Charitable Trust

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This is the story of Dementia Keyworker Service

The story of the Carer Education

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The story of Friends of Alzheimers & Countdown in the community

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Fundraising Profile & Annual Accounts

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Organisation Profile & Acknowledgements

ALZHEIMERS AUCKLAND | ANNUAL REPORT

Alzheimers disease is the most common cause of dementia (50-70%). As the disease progresses, physical changes occur in the structure of the brain. Brain cells die and the brain shrinks, especially in the inner parts of the temporal lobes.

Plaques and tangles form in the brain tissue and disrupt messages between brain cells, preventing the brain from working effectively.

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WHAT IS

Dementia?

WHAT CAUSES IT?

Dementia is a collection of symptoms resulting from brain cell death. This causes a progressive decline in a person’s ability to think, to remember and to reason. Dementia is not a normal part of ageing but the result of a disease process. Dementia is not a disease confined to the older person; younger onset dementia is becoming more prevalent and can affect people as young as 45.

So far, no one single factor has been identified as a cause for Alzheimers disease. It is likely that a combination of factors, including age, genetic inheritance and environmental factors are responsible. There is no cure.

WHAT ARE SOME SYMPTOMS? • Gradual memory loss

The latest statistics indicate there are around 15,000 people living with dementia in the Auckland area that we serve. For each of these people another 6-8 are dramatically impacted as caring for someone with dementia is extremely challenging physically, emotionally and financially.

The health and well-being of the carer is severely affected unless essential support is in place.

Currently we are able to provide support to 1500 families/whanau.

• Repeating statements or questions • Difficulty performing familiar tasks • Difficulty handling money • Loss of initiative • Impaired judgement • Disorientation of time and place • Personality changes • Changes in mood or behaviour • Problems with language

With ageing populations and people living longer, the number of people with dementia is predicted to more than double in the next 20 years.

• Deterioration in driving skills • Misplacing things Dementia is progressive and every person with dementia is different.

It is a destructive disease which starts from memory loss, leads to complete mental and physical incapacity and eventually death. The average progression of the disease is seven years but ranges from 2 – 20 years.

Gradually, most of the functions of the brain are affected. Eventually, people with dementia may need help with daily activities such as dressing, going to the toilet, showering and eating.

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ALZHEIMERS AUCKLAND

Charitable Trust

Alzheimers Auckland Charitable Trust is a charity registered with the NZ Charities Commission. We provide a comprehensive range of services. Our team is committed to ensuring early diagnosis, which enables early intervention, and results in better understanding and quality of care.

Simply, it means that people with dementia can live well in their own homes for much longer.

Additionally, we strongly believe it is essential that development in services reflects greater accountability based on measurable results.

We are passionate about empowering and enabling all people in the wider Auckland region who are affected by dementia. Alzheimers and other dementias can be very isolating and distressing and It is extremely important that people realise they do not have to travel this journey alone.

We have over 30 years’ experience of continuously developing and improving services, working in partnership with people affected by dementia and their families as well as health and social service professionals.

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Our Services

SOCIALISATION SERVICES

Alzheimers Auckland has a team of committed Health Professionals and Socialisation Team members that provide a wide variety of services throughout the Auckland area.

The Socialisation team, led by an Occupational Therapist, provide support in both individual and group activity settings. People with dementia often report how lonely they feel, and how disconnected from their communities they’ve become. The Socialisation team changes that perspective by joining social experiences for like- minded people to community based activities. Activity groups are specially tailored for people with dementia, and provide the carer with short term respite.

These services include:

CARER SUPPORT Our Dementia Key Workers provide information, education, advice, and support for people with dementia, their carers and families. This team of health professionals support carers with practical solutions and advice to ensure great outcomes for both the carer and the person with dementia.

Often acting as a friendly navigator, the Key Worker can often de-mystify the journey through the DHB and Community Service pathways. Carer support can be provided face to face, or through telephone support as determined by the carer.

EDUCATION We offer three forms of dementia related education. First, is Carer Education. Through a variety of offerings (daytime, night time, weekend, one-off), carers are supported to learn about dementia, practical strategies of communication, dealing with behaviours that challenge, and managing their own stress levels. The Education team also offers public awareness sessions designed to reduce the stigma and misinformation regarding dementia. Finally, the team provides education for health professionals.

SUPPORT GROUPS Support Groups offer carers time out from caring, and a place where they can talk with others in their situation and share coping strategies, tears and laughter. They are facilitated by Key Workers who can offer support, information and advice. Support groups minimise the social isolation often reported by carers of people with dementia. These groups also support each person to live well with dementia.

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THIS IS THE STORY OF THE

Dementia Key Worker Service that challenge them, understanding the dementia pathway and managing stress. Our Key Workers offer advice and information on all these topics and more - helping them to navigate their way through their dementia journey. They deliver a message of hope, encouraging everyone to see people with dementia in a new and positive light, and support all to live well with dementia.

One in three people are affected by dementia within their lifetime. This is either directly as a person with dementia or as a family member or even a friend or associate. For the carer they hold a significant responsibility and understandably experience significant stress largely associated with the burden of caring for the person with dementia.

At Alzheimers Auckland our team of health professional Key Workers provide the necessary support that enables the carer and the person with dementia to face the challenges and positive opportunities of each day. This support offers practical advice and strategies that enables carers to support a person with dementia, both the highs and lows. This occurs through the home visits, telephone consultations and support groups where carers get to meet people in similar situations. Support groups offer carers a safe setting to share and learn from each other, and to make a much needed social connection with people who understand the journey.

“ I just get so lonely” is a commonly heard plea. The Socialisation team provides people with dementia access to activities and outings within their own communities that are interest based, meaningful and maximise people’s abilities. They also provide one on one socialisation opportunities in endeavours to address the isolation experienced by people with dementia.

We have a dedicated team serving the entire Auckland region. Some of the key issues that carers report are of concern to them include finding their way through the health and legal systems, dealing with behaviours 9

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New in 2013!

This year Alzheimers Auckland introduced a range of community based groups for people with dementia across South Auckland. The groups provide meaningful and interesting social activities that enable people with dementia to enjoy participating in a way and at a level that works for them. The groups also provide a brief respite for the carer to enable them to catch up with their own affairs.

targeted at people with dementia has generated into a cross generational social experience where carers get to meet other carers; grandchildren support their grandparents; all get to have that most necessary exercise that is not only a good protective factor but slows down the progression of dementia. The noise of the chatter and laughter rings across the water! The participants look forward to this weekly activity. We now have walking groups in Blockhouse Bay, Pukekohe, Manurewa with more being set up as we speak.

Groups and activities being offered include: Gym groups, Walking, Gardening , Arts therapy, General Hobbies, Golf.

THE FACTS

Walking groups have become one of our most popular activities. This started with the St Heliers group which is generously supported by the Christian Health Trust. The walk starts in St Heliers and finishes at Mission Bay at a café for a coffee and people watching. This group which was

• 15,000 people are living with dementia in Auckland • There were 619 New Referrals to the Key Worker Service in 2013 • 1322 clients were regularly visited • We conducted 412 Support Groups in 47 locations around Auckland

For more information on our Key Worker Service please visit www.alzheimers.org.nz/auckland/ our-services

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We came here feeling out of our depth, lost, alone and we leave here with hope and information which has helped us with our Mum. You helped me to accept I will handle situations with my carer role in different ways on different days. I feel informed about how to manage and handle behaviour within myself. I will be a better carer as a result of the course.

Carer Education 2012 Participants Feedback

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THIS IS THE STORY OF OUR

Carer Education Programme CARER EDUCATION PROGRAM PROVIDES CARERS AND FAMILIES

Dementia doesn’t simply affect the person who has it. It profoundly changes the lives of those family members and friends who are close to that person.

• With an understanding of dementia • Practical advice on living with dementia

Over the past twelve months demand for dementia education services has increased significantly. A few years ago when the Carer Education programme began, only six courses a year were held throughout the greater Auckland region. The Education team has now increased to two full-time people; has solidified its practice and updated all carer education to include the most up-to-date clinical information and teaching approaches. The education takes a psycho-educative approach – which means it has a very practical component that focuses on giving practical strategies to support the carer to support the person with dementia.

• Communication Strategies • Tools for problem solving and managing stress • Strategies for coping with the changes that dementia brings Courses are held throughout the year in various locations throughout Auckland. For family members caring for someone with Alzheimers, or another form of dementia, our education programme provides invaluable information that can be applied to every day situations.

Special thanks to the Freemasons Roskill Foundation – these achievements would not have been possible without your generous donations and continued support.

THE FACTS • One in four people over 85 have dementia • 83 Carer Education programmes delivered

For more information on our Carer Education Program, please visit www.alzheimers.org.nz/ help-support/dementia-carers

• Ten locations across Auckland • 1243 individual attendances • Education opportunities increased by 11% from 2012

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FRIENDS OF

Alzheimers guests enjoyed the wonderful ambience and beautiful grounds of the Pah Homestead, home to the Wallace Art Collection. They were entertained by the extraordinarily delicate playing of the DSCH String Quartet, and a magnificently robust presentation from opera to popera! From members of Operatunity.

Dementia is a disease which requires a large amount of support and education to help people cope with day-to-day life. There are approximately 15,000 people living in Auckland currently suffering from a form of dementia, with this disease affecting on average 6-8 family members. Auckland Alzheimers Charitable Trust relies on the generosity of people and organisations to provide this service. With over 100,000 people affected by dementia in Auckland this requires a significant investment to operate and reach as many people as possible.

AACT is constantly looking for ways to secure more funds to enable us to improve the lives of more people affected by dementia. Here are some events we have organised over 2013...

We urgently need more volunteers for various roles around Auckland. If you, or someone you know is interested in joining the Friends of Alzheimers network please call 0800 004 001 or visit our website.

FRIENDS OF ALZHEIMERS We are extremely grateful to have an outstanding team of generous, highly capable volunteers as Friends of Alzheimers who support the work of Alzheimers Auckland. We are privileged to have Kate de Goldi, acclaimed author and also carer, as our Patron. Kate launched this initiative at the highly successful Garden Party held in March 2013. Over 150 13

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What an amazing result!

COUNTDOWN IN THE COMMUNITY

It will contribute to us reaching more people with dementia and their families and supporting them to have a life of reasonable quality.

The Tournament Organiser, Barry Fitzgerald, of Parnell Rotary, says dementia is a worthy cause.

“It has traditionally been below the Dave Chambers, Managing radar. For a lot of Director, Progressive Enterprises people it has been an unspoken family issue which has caused considerable emotional and physical hardship.”

It will go directly into service provision and enable more people than before to access our services, enable more education for careers and health professionals and enable more public awareness talks aimed to reduce the stigma and fear associated with dementia.

“The tournament is always fully booked with sponsors and teams coming back year after year.

The aim is to raise the profile of the disease in New Zealand,” Barry says. “How many times do people bring it up as part of the conversation? I’d argue not many. It is becoming more talked about over time though which is key.”

Barry Fitzgerald, Tournament Organiser, Parnell Rotary

So it’s a huge thank you to Dave Chambers and the team at Countdown for your extraordinary support.

We’re also very grateful for the great organizational skills of Barry Fitzgerald and John Fothergill from Parnell Rotary.

Jacques Losken, Business Manager, Advertising & Promotions, from Countdown has been tireless in his efforts to make this day happen.”

Every day 33 New Zealanders are diagnosed with dementia and in 2011 nearly 50,000 New Zealanders were living with the condition. This figure is expected to double over the next 20 years.

The proceeds help Alzheimers Auckland and supports people with dementia and their carers.

Alzheimers Auckland General Manager Julie Martin noted in her address that: ‘…you can be absolutely sure that the money raised today will be extremely wisely used and is much appreciated.

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FUNDRAISING PROFILE

2012 - 2013 AACT INCOME

3% INTEREST

27% GRANTS

49% DHB

0% EDUCATION

11% EVENTS 1% BEQUESTS 9% DONATIONS

2012 - 2013 AACT EXPENDITURE

10% ADMIN

2% AWARENESS

89% SERVICES

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ALZHEIMERS AUCKLAND

Financial Performance to June 30th 2013 INCOME

Donations Bequests Donations - Assets

135,476 14,478 4,465

Total 154,419

ACTIVITIES INCOME

Rotary Golf Day Alzheimers Quiz Night Other Activities

145,000 37,407 1,327

Total

CORE SUPPORT & SOCIALISATION SUPPORT

183,733

DHBS Respite Project Services

723,103 70,040

Total

CARER EDUCATION

793,142

Education Service Income

2,250

Total

GRANT INCOME

2,250

Grants Received Specified Grants Released

36,092 394,631

Total

INTEREST INCOME

430,723

55,144 954

Interest Received Other Income

Total 56,098

TOTAL INCOME 1,620,366

FUNDRAISING COSTS

Events Donations Other

15,646 23,313 818

Total

39,777

GROSS PROFIT 1,580,589

EXPENSES

Carer Support Socialisation Education Awareness General & Admin Depreciation

797,702 137,040 536,773 31,623 140,165 18,543

Total 1,661,846

EQUALS NET LOSS -81,257 16

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ORGANISATION Profile

REGISTERED OFFICE

OUR PURPOSE

Level 1 Suite 4 58 Surrey Crescent Grey Lynn Auckland 1021

The provision of services to empower and enable all people affected by dementia including carers, friends and family and to raise awareness and understanding of dementia within the community.

BANKERS

23 August 2011

ASB Bank Premier Banking Centre Albert Street Auckland

REGISTERED CHARITY NUMBER

SOLICITORS

CC46885

Gellert Ivanson 16 St Heliers Bay Road Auckland

DATE OF INCORPORATION

OFFICE HOLDERS Robert Turner (Chairperson) Jocelyn Weatherall (Vice Chairperson) Lia Mattei Dr Johan Jurgens Jan Beirman Liz Mitchelson Kate Kersey

AUDITORS Hayes Knight Audit NZ Newmarket Auckland

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THANK YOU TO

ANZ Staff Foundation ASB Community Trust Auckland Jaguar Drivers Club National Spring & Wire Products NZ Ltd Orewa Bridge Club Inc.

Our District Health Board Funders: Waitemata District Health Board Auckland District Health Board Counties Manukau District Health Board

Individual donors: Luminaries Garth Barfoot Ian Shroff Lynne Erceg

Our auditors Hayes Knight: We are very grateful to Hayes Knight for once again delivering our audited accounts at a very competitive fee. Also greatly appreciated is the wise counsel they provide.

Stars: Kaye Sole Rosanne Bishop Jeremy West Maureen McConville Sandra Langton Sir David Levene Roger Clark Anna Jacobi Jim Feist Davidine Rongo Val Hargreaves Graham Lincoln Mr & Mrs Mervyn and June Webster Motilal Velji Jim Horrocks Penny King Allana Owen Sheryl Grinham Elizabeth Clark Gwen Shaw Brian Petty Mr & Mrs Michael Floyd Stephanie Maitland Teresa Huijser Margaret Grimsdale Russell Fletcher

Charities, Trusts, Corporate and Community Donors: Pre-eminent: Countdown Freemasons Roskill Foundation Rotary Club of Parnell Dilmah Tea Avalanche Coffee Exxon Mobil Remuera Christian Trust The Trusts Charitable Foundation New Zealand Lotteries Ted & Mollie Carr Endowment Trust JM Thompson Charitable Trust Outstanding: Auckland Council Oceanbridge Shipping Rotary Club of Northcote Lion Foundation Maurice Paykel Trust C.R.Stead Trust Rehabilitation Welfare Trust Sir John Logan Campbell Trust 18