{"id":533155,"date":"2026-07-19T04:28:13","date_gmt":"2026-07-19T04:28:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/533155\/"},"modified":"2026-07-19T04:28:13","modified_gmt":"2026-07-19T04:28:13","slug":"papamoa-mothers-warning-after-husband-55-diagnosed-with-rare-dementia","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/533155\/","title":{"rendered":"Papamoa mother\u2019s warning after husband, 55, diagnosed with rare dementia"},"content":{"rendered":"

She\u2019s found that people often mistakenly believe the rare disorder is like other forms of dementia. But unlike Alzheimer\u2019s, for example, which usually starts with memory loss, bvFTD primarily attacks the brain\u2019s frontal and temporal lobes, causing sudden and dramatic personality changes.<\/p>\n

For Jacqui, it\u2019s heartbreaking how stark the contrast is from the once dependable, loyal family man Kevin, now 56, was before the disease.<\/p>\n

The pair met as teenagers in Ruak\u0101k\u0101 after their brothers set them up. They went on to build a noisy, love-filled family life with seven children that has grown to nine grandkids.<\/p>\n

After having four children, Jacqui thought their family was complete, but Kevin had other ideas.<\/p>\n

\u201cI said, \u2018Why don\u2019t we get a cat instead?\u2019 But I saw how much Kevin wanted it and loved being a dad, and I just couldn\u2019t say no.\u201d<\/p>\n

After a vasectomy reversal<\/a>, the couple welcomed three more children.<\/p>\n

\u201cKevin was just gleaming,\u201d she recalls. \u201cRaising seven children together has been beautiful.\u201d<\/p>\n

\"KevinKevin was a hands-on dad, says Jacqui. Photo \/ Juliette Drysdale<\/p>\n

Jacqui says Kevin was the kind of hands-on dad who had children climbing all over him the moment he walked through the door from work as a cellar hand.<\/p>\n

But looking back, she can now trace the first signs of bvFTD to around the time of the pandemic when the couple was already navigating the stress of lockdowns.<\/p>\n

\u201cThere were fabricated stories, endless driving, increased alcohol use, irrational decisions, compulsive phone behaviours and increasing isolation,\u201d explains Jacqui.<\/p>\n

The escalating changes placed enormous strain on the whole family, and their children expressed how worried they were about Jacqui. <\/p>\n

\u201cI had promised myself, and the kids were supporting me, that I\u2019d give Kevin until Christmas and if we didn\u2019t get answers or he didn\u2019t start changing, then we\u2019d separate because I couldn\u2019t keep living that way.\u201d<\/p>\n

Desperate to help Kevin, Jacqui organised holidays, encouraged him to join men\u2019s support groups and tried to keep their life together while quietly fearing something was terribly wrong.<\/p>\n

\u201cI was trying everything \u2013 you don\u2019t leave someone you love floundering knowing he\u2019s going to drown.\u201d<\/p>\n

One frightening incident saw Kevin lost for days while driving to Whang\u0101rei to visit his mother. <\/p>\n

Jacqui shares, \u201cHe wouldn\u2019t answer my calls, but I was tracking him on my phone and I ended up ringing the police because I was so worried. They did a welfare check. He was very disoriented, so they confiscated his driver\u2019s licence pending medical clearance.\u201d<\/p>\n

\"KevinKevin and Jacqui, with their children, partners and grandchildren. Photo \/ NZ Woman’s Weekly<\/p>\n

That started the process of diagnosis. After cognitive testing, blood work and scans, Kevin was formally diagnosed with bvFTD in August 2025<\/a>.<\/p>\n

The hallmarks of bvFTD are personality changes and a progressive decline in socially appropriate behaviour, judgement, self-control and empathy. People with bvFTD typically do not recognise the changes and there is currently no known cure.<\/p>\n

\u201cReceiving the diagnosis was devastating, but it also finally explained the years of confusion our family had been living through,\u201d reflects Jacqui. \u201cI\u2019m so pleased I pushed for answers. Imagine if I had left him.\u201d<\/p>\n

Kevin was medically retired from his job a month after diagnosis. Nine months later, life now revolves around routines, supervision and care. He needs help with meals and most daily tasks that others take for granted.<\/p>\n

When she\u2019s not looking after Kevin at home, Jacqui works as a community caregiver. <\/p>\n

\u201cI\u2019m grieving someone who is still physically here,\u201d she confides. \u201cThat is one of the hardest parts.\u201d <\/p>\n

But Jacqui remains deeply committed to her husband. <\/p>\n

\"\"<\/p>\n

\u201cMy life is just making sure Kevin is safe, that he feels comfortable and that his dignity is intact,\u201d says Jacqui. \u201cI truly believe this is what I am supposed to do. It\u2019s what I am \u2013 his wife and sadly now his carer too.\u201d<\/p>\n

While life looks different from what she ever imagined, Jacqui hopes sharing her experiences will reach others in a similar situation.<\/p>\n

\u201cIf it helps another family recognise the signs earlier, push for answers or not give up on someone they love because of drastic personality changes, then telling our story matters.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"She\u2019s found that people often mistakenly believe the rare disorder is like other forms of dementia. But unlike…\n","protected":false},"author":2,"featured_media":533156,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[19333,74,13019,799,797,4532,134,10109,112181,61092,30510,111,139,69,6029,62244,8205,263073,83116,3405,666,20110,1455,102,1530],"class_list":["post-533155","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-19333","tag-after","tag-burnout","tag-dementia","tag-diagnosed","tag-grief","tag-health","tag-husband","tag-jacqui","tag-kevin","tag-mothers","tag-new-zealand","tag-newzealand","tag-nz","tag-once","tag-papamoa","tag-rare","tag-sawford","tag-steady","tag-stress","tag-struggling","tag-thought","tag-warning","tag-with","tag-years"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/533155","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=533155"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/533155\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/533156"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=533155"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=533155"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=533155"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}