2014 - Dementia · PDF filedementia to make the most of life. ... Alzheimers Auckland Charitable Trust 7 Alzheimers Auckland 2014-15 — Where we want ... (Northern Regional Dementia

2014Auckland

For the year ended 30 June 2014ANNUAL REPORT

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

PHOTO: Courtesy Fairfax NZ/Western Leader

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“I don’t know where I’d be without my Dementia Key Worker. She’s so helpful, knowledgeable and understanding – always calm, pleasant and comforting – offering suggestions for coping. Going out of her way to locate some relevant recently read article and forward it on.

I wonder that she doesn’t cringe and run away when she sights me, ‘cause I seem always to be dumping my issues and problems on her.You truly are a star and I am very grateful. Grazie a mille.”

– Elaine..................................................................................................................................

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This is the story from the Chairman and General Manager

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Alzheimers Auckland Charitable Trust

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Alzheimers Auckland 2014-15 — Where we want to be

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This is the story of a Personal Journey

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This is the story of our Carer Education Programme

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This is the story of the Dementia Key Worker Service

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This is the story from our Socialisation Service

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Fundraising Profile & Annual Accounts

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Acknowledgements

................................................................................................................................................. ALZHEIMERS AUCKLAND | ANNUAL REPORT

ALZHEIMERS AUCKLAND | ANNUAL REPORT ................................................................................................................................................

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THIS IS THE STORY FROM THE

Chairman and General Manager

Alzheimer Auckland has 1700 people with dementia registered on its books and we directly support over two thousand carers.

These startling figures make the work of Alzheimers Auckland more significant. It was with this in mind that the board and leadership team reviewed the strategic plan in November 2013 and unilaterally agreed that the organisation must gear for growth

Dementia is a devastating illness; it is indiscriminate and can affect people as young as 40 or 50. In New Zealand it is projected that the number of people diagnosed with dementia will double over the next twenty years. Dementia numbers within the Northern region will increase in prevalence by 16% over 10 years and 49% in incidence over the same period (Northern Regional Dementia Work group, 2013). Approximately 12,000 people in greater Auckland have dementia – this is about 39% of the total incidence of dementia across New Zealand. And this doesn’t count their carers, family, whanau where typically at least one family member is directly caring for a person living with dementia with other family members providing indirect support – ie not living with the person with dementia. However there is an increasing number of people with dementia living alone.

and create the capability and capacity to meet the demand. And that is what we did.

We professionalised our workforce ensuring all the key workers are registered health professionals.

We transformed services to ensure they aligned with international best practice:

c We focused on supporting, educating, advising and informing carers, family and whanau on how they can best support their family member living with dementia

c Our key workers and socialisation teams are effectively delivering our programmes and initiatives to an ever increasing number of people – this year our referrals for carer support services increased by 30%

c Our socialisation service grew from 35 one on one people being supported to over 200 people joining in to the community based groups the team established across Auckland

c The impact of this work can be seen in the various stories throughout the report.

Our teams are supported by strong leadership and our key performance targets are reported quarterly to the board to ensure we remain on track.

We have engaged well with the three District Health


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Boards as they work to meet the Minister of Health’s expectation to develop dementia pathways and dementia models to better support people affected by dementia and improve their health and wellbeing. This work will complement the National Framework guide developed by the Ministry of Health.

Despite the increasing numbers we received no increase in funding from the District Health Boards whose contribution represents 47% of our operating costs. This puts considerable pressure on fundraising activities. To meet the gap our fundraising efforts were assisted by generous legacy contributions and our many donors who continue to support us. Income from grants was well down from the previous year reinforcing the need for us to further develop sustainable income streams and to manage within a competitive fundraising market. To this end, a study was undertaken to assess the feasibility of establishing a Charity shop and now we have our first shop open and trading in Takapuna. On a positive note, despite the fundraising pressures overall income increased by 22%.

This report will emphasise the highlights as well as some of the challenges (largely fundraising) from the year. But overall we are well positioned to meet the challenges that a new year brings.

We would like to extend our sincere appreciation to all our supporters and in particular to Countdown who very generously donate the proceeds from their annual charity golf day – and have been doing this for eleven years now with over $1m donated to Alzheimers Auckland. Countdown, in partnership with Parnell Rotary are our heroes. Thank you also to our board members, other volunteers and staff.

It is with all the support we receive that Alzheimers Auckland continues to inspire people living with dementia to make the most of each day.

Mate Hinengaro o Tamaki Makaurau, he whakaohoho ake ana i te hunga kua pā ana ki te wareware kia pai ia RA!!

Robert Turner, Chairperson Julie Martin, General Manager

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ALZHEIMERS AUCKLAND | ANNUAL REPORT ..............................................................................................................................................................

Vision:Alzheimers Auckland inspires people living with dementia to make the most of each day.

Alzheimers Auckland provides four main services to support people to live well with dementia:

• Supporting CarersOur Dementia Key Workers are registered health professionals who support the journey people living with dementia and their carers undertake by providing information, education, advice, and support. These supports are offered through intensive home visiting, telephone consultations and support groups. As each person’s journey is unique, the Key Workers develop unique supports designed to maximise the quality of life for the person living with dementia and their carers, family/whanau and friends.

• Supporting People Living with DementiaThe Respite & Rehabilitation (R&R) team provides 1:1 or group support to people living with dementia. Activities are interest based and meaningful, and take place within the person’s community. While the person living with dementia is supported, the carer is able to gain intervals of respite necessary for the carer’s health and well-being. All R&R services are clinically overseen by an Occupational Therapist.

ALzHEIMERS AUCKLAND

Alzheimers Auckland is changing the face of dementia by supporting, informing, educating.

• Educating CarersUsing a psycho-educative approach we provide education courses for carers to give them information and skills to help with the task of caring for a person living with dementia. We offer flexible scheduling and themed topics to support carers to learn at their own pace and need. We also offer training for health professionals, home care and rest home staff.

• Raising Public AwarenessThe entire Alzheimers Auckland team reaches out to the public with each interaction. As two in three people in New zealand will be affected by dementia in some way during their lifetimes, it is critical a message of hope and living well is given each day. We reach out through community groups, churches, and organised information events.

• InnovationWe’re doing things differently! With significant international research backing us up, we’ve started offering “Dementia Cafés” which join a support group to a socialisation group. People living with dementia and their carers come to the café for a shared social experience, the group then splits into two – with one walking with the socialisation team, and the other participating in a less formal support group facilitated by the Key Worker.We’re trying new things! We heard the feedback that not all people felt comfortable in support groups because of cultural differences, and we responded. We started the first Pacific support group that is focused around a shared meal, shared experiences and shared strategies specific to the Pacific culture.

Charitable Trust


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We’re brave with technology! With the generous support of a grant, we purchased six iPads to begin trialling ways modern technology can enhance the life of a person living with dementia and their carer, as well as how technology can enhance the ease with which we deliver our services.

We’re filling a gap in the dementia sector! Not

everyone wants to use dementia day programmes or residential respite services, so we found a place in the middle. With generous support from Counties Manukau District Health Board, we’re delivering interest based groups in people’s communities. These groups provide respite for the carer as well as meaningful activity for the person living with dementia.

Service Growth• We’ve seen a 29% growth in the number of

people with dementia supported. We now support more people than we ever have before!

Service Excellence• We’ve introduced a new service model based

on the work of Dr Mary Mittelman. This has shifted our focus to face to face intensive home visits for the first six months. The Key Workers are spending more time with more clients than ever before

• The Socialisation team is supporting many more people! We started the year with 25 clients and finished with 366 clients.

• We’re all about dementia friendly communities. With outreach programmes with organisations like the Auckland Art Gallery, we’re ensuring accessibility for people living with dementia.

• We’re putting physical activity at the front. With huge uptake of our walking and exercise groups, we’re encouraging people to get fit and stay fit. Physical fitness is a key protective factor in slowing the progression of dementia.

• We’re measuring what really matters. With our Outcomes Framework, we now know that carers are

WHAT A YEAR!

most stressed at the time of referral, and that stress is different dependent upon age, ethnicity and type of dementia.

• We’ve moved from a “nice to have” service to a “must have for clinical excellence” service! We’ve participated in the development of the Dementia Pathways in each of the District Health Boards in Auckland, worked through pilots and trials, and anticipate being integral as the pathways are finalised.

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FUNDRAISING

2014-15 — Where we want to be

We have to raise at least $1m a year and are so very grateful for all the support we receive. We’ve worked hard to diversify our fundraising programme and highlights this year include –

• Countdown’s annual charity golf day organised in partnership with the Parnell Rotary Club. We are so very fortunate to be the beneficiary of this wonderful event.

• The many funders who have approved our funding applications. We received over $256,000 in grants that have supported the delivery of services to approximately 1700 people with dementia and their families.

• Our donor acquisition programme. We worked with Inivo (was KMS Data) to attract new supporters.

• The collection outside Countdown stores each July. We are always humbled by the wonderful volunteers who give us their time, the people who kindly donate to us, with many sharing their own personal stories of their journey with

dementia and the support we receive from each store’s Manager and Staff.

• Mike Fisher and the Team at Elite Food Group who make the wonderful lamingtons on sale at Countdown each July. Always a pleasure to work with you.

• Social Media – such a growing and ever changing area. We have 408 Facebooks Friends and 625 Twitter followers. How exciting! We look forward to reporting on an increase in these numbers next year. Are you one of our Facebook Friends?

• Our new bequest brochure. No one likes to talk about dying but research shows that if you leave a bequest (or a gift in your Will) to charity, you’ll live longer. The brochure is just the start of our new programme. If you’d like a copy please contact us and we’ll put a one in the mail to you.

• We’ve achieved certification! Alzheimers Auckland went through a voluntary audit against the national Home and Community Sector standards and achieved a three year certification.

Public Awareness• We’re talking to the experts. With the great support

of Bupa, we were able to offer a public education session with Professor Graham Stokes. His talk was

evocative, and inspired not only our team, but the public as well.

• We’re leading the information wave. Alzheimers Auckland offered its first Annual Dementia Symposium to launch World Alzheimers Awareness month on August 31, 2013. We hosted over 150 for the event, and received wholly positive feedback from participants. So much so that we started planning immediately for 2014.

Everyone who supports us in whatever way is amazing – thank you!


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ALzHEIMERS AUCKLAND 2014-15 — Where we want to be

Over this year AACT will focus on business improvement to ensure services and systems are well positioned to support long term success and sustainability. We will continue to build on the strong stakeholder relationships including working with like-minded others to achieve strategic alliances and partnerships. All of this will serve to ensure that we are supporting people affected by dementia with excellence – excellent services and excellent programmes delivered by teams with excellent skills.

We will continue to explore opportunities to expand our income streams and we look forward to seeing the results of year one of The Memory Shop – the proceeds of which will contribute to supporting service delivery.

By the end of this coming year AACT will be well positioned to demonstrate its leadership in the sector and well positioned for growth and further innovation.

In fact:

• we expect to have reached out to support and educate more people to be living well with dementia – last year our numbers grew by 30%

• we expect to have a thriving rehabilitation and respite service where people with dementia get to connect with others in the community and benefit from the activity based interventions on offer

• we expect we will have participated or taken a lead in new and innovative approaches to supporting people affected by dementia

• we expect to have even stronger relationships with our supporters

• we expect to meet, even do better than budget targets

• we expect to be the “turn to” organisation for all things related to dementia

We can only achieve what we want this coming year with your help and we achieved what we did this year due to your support.

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A year ago we were approached by a woman struggling with her mother’s memory loss. Our Key Worker invited the daughter out for coffee and learned that her mother was becoming increasingly forgetful and that it was impacting her safety at home. Our Key Worker supported her to get her mother to the doctor. The diagnosis came back – Alzheimer’s disease. Once the diagnosis was confirmed, Alzheimers Auckland began actively supporting the family with intensive home visits. During these home visits, we discovered her mother had spent her working life as a registered nurse supporting older people, especially in rest homes. She had not taken the diagnosis well, and was worried about having to enter a rest home.

It is Alzheimers Auckland’s intention to walk the entire journey of dementia with the person, the carer, the whanau and the community to provide the skills, the knowledge and the strategies to live well. When the pieces come together, we know that people affected by dementia can live each day well and with hope.

Personal JourneyTHIS IS THE STORY OF A

Our Key Worker reassured her that her daughters would be given the skills and strategies to support her at home for as long as possible. Reassured, her mother relaxed back into her life. The daughter, who self-referred, went on a mission to learn EVERYTHING she could about Alzheimer’s disease. With the support of her Key Worker, she attended Carer Education, and reported “That’s the best thing I could have done. What a difference it’s made. I understand my mother better now, but I also understand my own reactions better as well”.

Having gained skills, knowledge and strategies through home visits with the Key Worker and Carer Education, the daughter was encouraged to join a monthly support group. She did join a Support Group, and found a group of like minded people who were changing their lives to entwine the threads of dementia. She gained strength from the other members of her group, and learned to find the funny side of dementia – the odd things that could be found in the freezer, the repeated family jokes and stories. She learned to leave the worry about “the end” – and to face each day with hope.


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Throughout the support group journey, the daughter underwent a major life change. Rather than simply being a daughter, she became her mother’s champion. She corralled her family into education and worked with them to STOP testing their mother’s recall, and to simply be present in the moment. She taught her own family to stop worrying about how many vegetables her mother was eating, and to focus on her mother’s enjoyment of family meals and celebrations. She built a self contained unit onto her home, and helped her mother make the transition to living somewhere new before this became too difficult.

As her mother’s symptoms progressed, the daughter worried that her mother wasn’t going out anymore – that she simply wouldn’t get up off the couch. Alzheimers Auckland put in place one-on-one socialisation support for her mother. Each week, a team member took her mother out for hot chocolate, browsing through shops, going for walks, and generally supporting her re-integration into her community developing trust so that she could transition into group services that are also facilitated by AACT. Now her mother attends three groups per

week (Walking, Exercise and Cognitive Stimulation), and just loves socialising. Her mother also goes to work with her a couple of days per week. In a highly supportive and inclusive environment, her mother helps keep the kitchen tidy, can be found having great conversations with the team, and helps look after the young children in the building. The daughter has made sure that the entire building understands dementia, and how to communicate with her mother.

The daughter summed up her journey in the following way:

“It’s all been about smoothing the way”

This is about a life that is continuing, yet always changing. Alzheimers Auckland works in partnership with this daughter and mother (just one of the many families supported by AACT), supporting both, and smoothing the way.

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Typically delivered over four sessions of two hours each, Carer Education begins with demystifying dementia. We often hear the tale of a carer receiving the diagnosis of dementia and not having enough knowledge to even ask a question in the doctor’s office. Dementia is a complex and progressive condition that changes the brain and

Education is power.Carer education empowers people with knowledge and strategies enabling them to cope with the unique journey of dementia. Alzheimers Auckland begins the education journey with the Key Worker, who provides intensive education and support in the home during the first four to six months from referral. During this intensive period, each Key Worker supports the carer to attend a more formal Carer Education programme.

Carer Education ProgrammeTHIS IS THE STORY OF OUR

resulting functions. Carer Education takes a step by step approach to explain the diagnosis. One carer said “I didn’t know how to even ask a question about my husband’s Alzheimer’s disease. Now I understand what is happening in his brain and that he’s not doing this on purpose.”

The concept of “ambivalent grief” is explored through all sessions, as some carers report acute grief at the loss of the important relationship between themselves and the person they’re supporting. When this grief is recognised, each carer faces the guilt of continual grieving and wishing it were all over at the same time. This ambivalence, once recognised, typically prompts an outpouring for each carer, but they leave armed with information and a better understanding.

The second session typically deals with communication strategies. Carers are gently encouraged to modify their communication methods,


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and are coached in non-verbal communication. Carers are also instructed to stop quizzing the person with dementia with questions that start with “Don’t you remember…” or “I’ve told you this five times…” Strategies for dealing with conflict are also reviewed. Most commonly, carers are instructed as to how to defuse potential conflict before it arises. One carer stated “As soon as I surrendered the battle, I won the war. We don’t fight anymore, and it’s so peaceful in our home”.

The third session is based on “caring for the carer”, which guides each carer to find their own strengths, to manage their own stress, and learning to ask for help. One of the most common difficulty that carers face is their own hesitance to reach out to their own families and support systems for the help they need. One carer reported being worn to a thread by all of the housekeeping she was doing. Our Educator calmly asked if she could afford some private help. The carer was so startled by the question she laughed. The carer

had a paid cleaner helping her by the next education session and reported that something so simple had made such a difference! The other members of her Education group made plans to call the same cleaning service! We also support those eligible to receive funded home based services with referrals to NASC.

The final session focuses on “What’s next”. Many carers want to know what happens at the end of the journey. With great compassion and support, our Educator provides some of these details, while emphasizing that each journey is unique and unpredictable. The Educator provides the facts of Enduring Power of Attorney, general health, home based support services, etc. Carers build a library of resources they may require in the future.

The most common feedback we receive from carers is:

“I wish I had done this sooner!”

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With each new referral, the Key Workers, who are registered health professionals, complete a home visit that includes assessment of carer stress and quality of life. This home visit signals the start of an intensive phase of support which blends all service arms of Alzheimers Auckland – Carer Support, Education and Socialisation. At the heart of the services lies the partnership between the primary carer and the Key Worker.

The partnership works through areas of actual or potential stress for the carer including:

• Carer Self Esteem• Family Involvement• Financial/ Legal impact• Disruption to their day to day schedule• Health of the Carer and Person with Dementia• Behaviours that challenge

Each home visit or telephone consultation involves moving carers forward in each of these areas. Having built rapport with their Key Worker, carers deepen their knowledge and understanding,

Carer Support – our Dementia Key Worker service – has been through a huge change this year. We have established a new service model that emphasises home visiting and support groups, but continues to recognise the value of regular telephone consultations.

Dementia Key Worker ServiceTHIS IS THE STORY OF THE

and build a repertoire of strategies that can be used to cope with the day to day challenges of caring.

Every six months, the Key Worker works through a re-assessment process with the carer. Goals are re-prioritised, and work continues. Most typically, carers are happy to move from home visiting into monthly support groups. It’s in the monthly support groups, facilitated by a Key Worker, that carers make a social connection with other like-minded people. The Key Worker ensures that each support group offers on-going strategies for supporting the person with dementia.

Feedback from carers includes the following:

“Thank you for your patience and understanding”

“It helps to know that I can call you whenever I need you”

“Smiling, listening, caring and understanding. That’s who my Key Worker is”

“Your support helps me get through each day”


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What a great year we’ve had with our Socialisation service!

2013-2014 was a banner year for the development of our Socialisation service. We were fortunate to work through a funded project with Counties Manukau District Health Board to develop an Innovative Respite service. The premise of the project was that carers needed flexible respite options of shorter duration than full day/night, and the focus would be on supporting people living with dementia to participate in meaningful, interest based and community based.

We worked through some major learnings regarding transportation, carer anxiety, and community access. We recruited an Occupational Therapist and Respite Coordinator, held our breath, and took the plunge into the unknown.

The clients who participated in the project were gracious with our mis-steps. Who knew that a gardening group would be unwanted? They celebrated our achievements. Again, who knew a Golf Group would be so popular. They turned out in vast numbers for walking groups – rain or shine! And, mostly, really enjoyed themselves. We finished the project with 12 active groups that ranged from Arts Therapy to Walking to Library Groups. Counties Manukau DHB responded by continuing to fund this service, and made one simple request – carry on.

Socialisation ServiceTHIS IS THE STORY FROM OUR

The Innovate Respite project spread throughout our entire organisation, and is now active from Orewa to Pukekohe. Apart from Counties Manukau , these services are funded through generous donations and grants/trusts. We are endeavouring to secure sustainable funding for this service arm.

At the beginning of the journey, Alzheimers Auckland was supporting 35 people with dementia through our one-on-one home based dementia support service. At the close of business June 2014, we had supported 366 individuals through our new Socialisation service. What amazing growth!

Feedback from people living with dementia includes:

“It’s so nice to make friends again”

“I feel more alive every time I come to group”

“I get excited about seeing people, doing more, being more”

“The groups make a difference to me and my wife. I need a break from her hovering over me”

“Can you please tell my family that they can’t come to group? This is my fun, not theirs!

1% AWARENESS

12% ADMINISTRATION

87% SERVICES

44% DHBS

13% DONATIONS

16% BEQUESTS

12% EVENTS

13% GRANTS

2% INTEREST2013 - 2014 AACT INCOME

2013 - 2014 AACT EXPENDITURE

1% AWARENESS

12% ADMINISTRATION

87% SERVICES

44% DHBS

13% DONATIONS

16% BEQUESTS

12% EVENTS

13% GRANTS

2% INTEREST2013 - 2014 AACT INCOME

2013 - 2014 AACT EXPENDITURE


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49% DHBS

89% SERVICES

27% GRANTS

2% AWARENESS

3% INTEREST

9% DONATIONS

1% BEQUESTS

11% EVENTS

10% ADMINISTRATION

2012 - 2013 AACT INCOME

2012-2013 ACCT EXPENDITURE

49% DHBS

89% SERVICES

27% GRANTS

2% AWARENESS

3% INTEREST

9% DONATIONS

1% BEQUESTS

11% EVENTS

10% ADMINISTRATION




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ALZHEIMERS AUCKLANDFinancial Performance for the 12 months ending 30 June 2014

INCOMEDonations 261,453Bequests 305,327

Total 566,780

ACTIVITIES INCOMECharity Golf Day 152,000Alzheimers Quiz Night 21,113Other Activities 57,752

Total 230,865

CORE SUPPORT & SOCIALISATION SUPPORTDHBS 755,839Respite Project Services 103,068

Total 858,907

CARER EDUCATIONEducation Service Income 4,640

Total 4,640

GRANT INCOMEGrants Received 256,895

Total 256,895

INTEREST INCOMEInterest Received 44,452Other Income 533

Total 44,985

TOTAL INCOME 1,963,072

FUNDRAISING COSTSEvents 20,656Donations 98,678Other 1,946

Total 121,280

GROSS PROFIT 1,841,792

EXPENSESCarer Support 808,345Socialisation 160,178Education 725,433Awareness 11,202General & Administration 233,196Depreciation 36,037

Total 1,974,390

EQUALS NET LOSS 132,598

49% DHBS

89% SERVICES

27% GRANTS

2% AWARENESS

3% INTEREST

9% DONATIONS

1% BEQUESTS

11% EVENTS

10% ADMINISTRATION



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“I would like to thank my Dementia Key Worker and Alzheimers Auckland for all the help I have had.

It was very hard to know where to go for help and Alzheimers Auckland was there for me in each step.

It was a huge help for me to have a Key Worker that I could ring and speak to. I had some difficult times and my Key Worker was there for me and gave me good advice.

I have recommended Alzheimers Auckland to friends as you definitely need someone to talk to.The walking groups and the Carers Support meeting once a month are a great help too.”

Regards Judy..................................................................................................................................


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THANK YOU TO

Our District Health Board Funders:

Counties Manukau District Health BoardAuckland District Health BoardWaitemata District Health Board

Trusts, Foundations, Corporate and Community Donors

Progressive EnterprisesRotary Club of Parnell

Auckland CouncilCOGS AucklandCOGS ManukauCOGS Papakura FranklinCOGS WaitakereEstate of Ernest Hyam DavisFour Winds FoundationFreemasons Roskill FoundationInfinity FoundationJM Thompson Charitable TrustJA Redwood Charitable TrustMaurice Paykel Charitable Trust Mt Wellington Foundation LtdNessbank Trust New zealand Lottery Grants BoardOrder of the Eastern StarPub Charity LtdRemuera Christian TrustSir John Logan Campbell Residuary EstateTed and Mollie Carr Endowment FundThe Clyde Graham Charitable TrustThe Trusts Community Foundation

We would like to thank all of our supporters whose gifts make it possible for us to provide essential services for all people affected by dementia.

Our heartfelt appreciation goes to you all.

Thank you.

Alzheimers Auckland Charitable TrustLevel 1, Suite 4, 58 Surrey Crescent

Grey Lynn Auckland 1021 PO Box 5132

Wellesley Street Auckland 1141Phone: 09 622 4230

Freephone: 0800 004 001 Email: [email protected] Web: www.alzheimers.co.nz

Documents

2014 - Dementia · PDF filedementia to make the most of life. ... Alzheimers Auckland Charitable Trust 7 Alzheimers Auckland 2014-15 — Where we want ... (Northern Regional Dementia