Eastern Bay of PlentyAUTUMN | NGAHURU 2026Kevin’s StoryBehavioural Variant Frontotemporal DementiaWe started noticing changes in Kevin aboutfour years ago. At first, we put it down to amidlife crisis and shrugged it off.But over time, things began to shift again, hestarted avoiding work, making up stories thatsounded completely real, and talking aboutthings he’d just heard as if they were his ownmemories, or reminiscing endlessly about theold days.Then one day, Kevin did something so out ofcharacter that I thought, “this isn’t Kevin.” Iassumed it might be depression or a cry forhelp. I got him into a men’s group andarranged a phone screening for depressionhe passed, and they found no concerns.This pattern went on for around three years.Then, in April this year, something veryconcerning happened, Kevin needed medicalclearance to have his licence reinstated andhe failed his cognitive test. Blood testsshowed his vitamin B12 was extremely low,and we thought, “great we can fix that!”But after treatment and another cognitivetest, he failed again.By this stage, his workplace had startednoticing a big change in his performance. Theyraised concerns and held a meeting They wereextremely supportive and wanted to help withwhatever was going on. At that stage we allthought it was vitamin B12 deficiency.We went back to the doctor, who arranged a CTscan. It showed “mild atrophy”. We were sad,but we thought, mild dementia we can managethat, many years with patience, understandingand grace, however......Then, on August 24th, we got a call from thedoctor. She told us Kevin’s CT had been misreadit actually showed severe atrophy.Continued....
Two days later, on August 26th, Kevin wasdiagnosed with Behavioural VariantFrontotemporal Dementia (BvFTD). We wereleft shocked and heartbroken.Suddenly, everything from the past few yearsstarted to make sense.Within six weeks, Kevin was diagnosed withBvFTD (never had we heard of it) lost his job,his income, and his driver’s licence. We’renow selling his truck it’s like losing anotherpiece of him. He’s lost his purpose andstructure, and the decline is becoming moreobvious every day. The vacant look in hiseyes, the changes in his behaviour… sadly,the beautiful husband, dad, brother, andfriend we know is slipping away right beforeour eyes. This disease steals and it will nevergive back. It will keep taking.It’s stolen so much yet, in its cruelty, it’s alsogiven back a sense of respect, dignity, and hisMana, and brought with it more grace,patience, and love.BvFTD is a cruel, exhausting, heartbreakingdisease. It’s incurable, progressive, andultimately terminal. We don’t know how longwe have left with Kevin, but the progressionis noticeable.The day the doctor called me, I rememberseeing a clip of Emma Willis’s documentaryon social media and thinking, that’s Kevin.Those words have never left me.If you notice a massive change in someone’spersonality or behaviour, don’t take it lightly.This disease hides behind so many faces,depression, stress, burnout, even midlifecrisis. The earlier it’s recognised, the soonerfamilies can get help and understanding.When words fail and memories fade,love still communicates.A hand held, a smile shared, a calmpresence - these gestures last longerthan facts or names.Even on the hardest days,your love is remembered, even if thedetails are not.Never underestimate the power ofsimple, heartfelt connection.Love speaks louder thanmemory ever could.Florence Mankhanamba
Welcome to our Autumn| Ngahuru editionIn this edition we celebrate long‑serving Volunteer John Renshaw, who has spent 13 years asa Companion, supporting 12 people with dementia. John describes his volunteering as a“wonderful journey,” and his generosity of time and support has made a lasting differencefor people living with dementia.Volunteers like John are at the heart of our organisation, and we are deeply grateful for theirsupport.To learn more about volunteering, contact our Volunteer Coordinator Talia on 027 382 7299.John Renshaw Our Community TeamLesley, Elayne, Lee and TaliaThe lovely ladies from the Knit and Natter group of the Edgecumbe Women’s Institute havekindly created and donated TwiddleMuffs for people living with dementia.TwiddleMuffs are soft, textured hand warmers designed to provide comfort, warmth, andreassurance, helping to reduce anxiety and keep restless hands occupied. If you, or someoneyou support, would benefit from a TwiddleMuff, please speak with your Navigator.Did you know we have dementia friendly items you can loan? Thanks to the lovely ladies atQuota you can borrow jigsaws, aqua-paints, games, digital clock, books and Handly Tools.The Handly Tools allow you to safely enter and exit your vehicle.Please ask your Navigator for more details.Ngā mihi nuiSue Cave, ManagerMessage from our Manager
Save the Date !ALZHEIMERSSOCIETYEBOPPH 07 308 0525CHAIRPERSONJenny DowthwaiteBOARD MEMBERSPat KanePeter HillMaria ClarkeJudy RuijnePaul AllingtonMANAGERSue CaveNAVIGATORSElayne TangituLesley HarrisLee HarperEDUCATORFiona HutchesonVOLUNTEERCOORDINATORTalia SpackmanADMINISTRATORHeather BalcombeWe have lots of events coming up so please save the date.We would love to see you there!Saturday 21st MarchHave a Heart Expo and Family Festival 10am to 2pm.Whakatane War Memorial HallWednesday 25 March thBlokes Shed Opotiki are having an open day from 9am to 12pm.Come along and learn more about this dementia friendly workshop,see the awesome toys and other products they make and meet theVolunteers.They are based behind Peria House 43 Richard Street Opotiki.Monday 22 June ndWe’re having a movie night at Whaka Max!The movie is called June Again, an Australian comedy with a dementiastory starring the wonderful Noni Hazlehurst. More details to come!Sunday 20 September thWe will be hosting our annual “Memory Walk” again for World AlzheimersMonth. More details closer to the time.Watch this Space!Our Educator Fiona is planning to host some “Healthy Brain”seminars this year. They will be open to the public and in variouslocations.Our popular Cognitive Stimulation Therapy program is in theplanning phase. For more information contact your Navigator.We are currently working alongside Otago University and AucklandUniversity to trial a Virtual Cognitive Stimulation Therapy program inthe Eastern Bay of Plenty. We’re very excited about this newinitiative.
Music and MemoryHow Songs Can Bring Back the PastMusic has a unique ability to unlockmemories and emotions, making it a powerfultool for people living with dementia. Familiarsongs can help stimulate recall, reduceanxiety, and bring moments of joy andconnection. Let’s explore how music cansupport memory and well-being.Why Music is Powerful for MemoryConnects to Emotion: Unlike spokenwords, music taps into deep emotions,which are often preserved even asdementia progresses.Stimulates Multiple Brain Areas: Listeningto music activates different parts of thebrain, including those linked to memoryand emotions.Triggers Autobiographical Memories:Songs from childhood and youngadulthood are often deeply ingrained andcan bring back vivid memories.Ways to Use Music for Memory Support1. Create a Personalized PlaylistCompile a list of songs that hold specialmeaning. Focus on music from earlyadulthood (ages 15-30), as these songs oftenhave the strongest connection to memories.2. Sing Along to Familiar SongsSinging can engage the brain even more thanlistening alone. It can also boost mood andcreate a shared experience between theperson with dementia and their loved ones.3. Use Music to Soothe and Reduce AnxietySoft, slow-tempo music can help easerestlessness or agitation, especially in theevening when sundowning symptoms mayappear.4. Encourage Gentle MovementClapping, tapping to the rhythm, or slowdancing can provide a sense of engagementand joy. Even small movements can enhancemood and physical well-being.5. Pair Music with Daily ActivitiesPlaying calming music during meals orfamiliar songs while getting ready can makeroutine activities more enjoyable andstructured.Real-Life ImpactMany carers have witnessed how a singlesong can bring light to their loved one’s eyes.A person who may struggle to communicatemight suddenly sing every word of a favoritetune. These moments highlight the deepconnection between music and memory.Music is more than just entertainment—it’s abridge to the past, a source of comfort, and away to bring people together.By incorporating music into daily life, we cancreate meaningful experiences and enhancethe well-being of those living with dementia.
Navigating Carer GuiltLetting Go of Self-BlameCaring for a loved one with dementia is bothrewarding and emotionally challenging. Manycarers experience guilt—guilt for feeling tired,for wanting a break, for losing patience, or fornot doing enough. While these feelings arecommon, it’s important to recognize that theyare not a reflection of failure. Learning tomanage carer guilt can help you maintain yourwell-being while continuing to providecompassionate care.Understanding Carer GuiltCarer guilt can stem from many sources, suchas:Feeling that you should be doing more,even when you’re already giving your best.Struggling with frustration, exhaustion, orresentment.Making difficult decisions, such as moving aloved one into care.Taking time for yourself and worrying thatit’s selfish.Recognising these feelings as natural can helpyou start addressing them with selfcompassion.Strategies to Overcome Carer Guilt1. Reframe Your ThoughtsInstead of saying, “I should be doing more,”remind yourself, “I am doing the best I canwith the resources I have.”Acknowledge the love and effort you putinto caregiving every day.2. Accept That Perfection is ImpossibleNo one can provide perfect care 100% ofthe time.It’s okay to have moments of frustration orfatigue—it doesn’t mean you care any less.3. Take Breaks Without GuiltResting and recharging allow you to be abetter carer in the long run.Consider respite care, support groups, orasking family and friends for help.4. Recognise the Benefits of Seeking HelpPlacing a loved one in care or using supportservices is not a failure—it ensures theyreceive the best care possible whileprotecting your own well-being.Support is a strength, not a weakness.5. Focus on What You Can ControlSome aspects of dementia are beyondanyone’s control.Shift your energy towards providing love,patience, and support in the presentmoment.Letting Go of Self-BlameCaring for someone with dementia is a journeyfilled with both beautiful and difficultmoments. Allow yourself grace, patience, andkindness—just as you do for your loved one.You are doing enough, and you deserve care,too.
Carer Support GroupsIf you want to meet others in similar situations, socialise, gain information, share experiencesand learn more about dementia, please pop along for a cuppa and chat.Whakatāne Kawerau ŌpōtikiCondolencesAlzheimers Eastern Bay ofPlenty Office193-195 The Strand1 Floor, Lightning Hub stWhakatāne 312010.30am - 12pmWith Lee31 March 202628 April 202626 May 202630 June 202628 July 202625 August 202629 September 202627 October 2025Bert Hamilton Hall4 Porritt DriveKawerau 312710.30am - 12pmWith Lesley19 March 202630 April 202628 May 202625 June 202623 July 202620 August 202617 September 202529 October 2025Heartlands REAP93A Church StreetŌpōtiki 312210.30am - 12pmWith Elayne31 March 202628 April 202626 May 202630 June 202628 July 202625 August 202629 September 202627 October 2025We extend our deepest sympathy to those who have lost a loved onerecently. We would like to thank all the families who have requesteddonations to Alzheimer's EBOP to be made in lieu of flowers.We are considering setting up a Carers Support Group in the Rangitaiki area.If you are interested, please contact your Navigator, Elayne.
Name:Address:Telephone:Email:Annual SubscriptionMembership year - 1st April to 31st MarchIndividual/Family $5.00I wish to make a donation $(donations of$5 or more aretax deductible)Total: $I would like to receive a newsletter by emailI would like to receive a newsletter by postMembership FormPost to:Alzheimers Society Eastern Bay of PlentyPO Box 13WHAKATĀNE 3158Online:www.alzheimers.org.nz/southcanterburyBank Transfer:Alzheimers Society Eastern Bay of Plenty03-0490-0180920-00Reference: Your NameDonating to the Eastern Bay of Plenty Community Foundation Endowment Fund for Alzheimers EBOP, usually by aone-off payment or by provision in your Will.This is a “gift that keeps on giving” as every year income is received by way of investment growth of the EndowmentFund.Remember you can claim a tax credit from IRD (using form IR526) at the end of the tax year if, during that year, you:· donated $5.00 or more to Alzheimers Eastern Bay of Plenty and· are a NZ tax resident and· received taxable incomeBequests and DonationsIf you would like to support our services and make a positive difference to the lives of those affected by dementiayou may like to consider making a bequest or donation to Alzheimers EBOP. This can be completed in several ways:· Making an online payment 03-0490-0180920-00 using your name as reference· Making a one-off or regular payment· Leaving a gift in your Will (please contact us for more information)
We thank the following for their ongoing support Alzheimers Society Eastern Bay of Plenty Incorporated Lightning Hub, 1 Floor, 193-195 The Strand, Whakatāne 3120stPO Box 13 Whakatāne 3158www.alzheimers.org.nz/eastern-bay-of-plentyPhone 07 308 0525 or 0800 004 001