{"id":640448,"date":"2026-06-15T20:33:20","date_gmt":"2026-06-15T20:33:20","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/640448\/"},"modified":"2026-06-15T20:33:20","modified_gmt":"2026-06-15T20:33:20","slug":"caring-for-someone-with-dementia-24-7-is-unbelievably-hard","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/640448\/","title":{"rendered":"\u2018Caring for someone with dementia 24\/7 is unbelievably hard\u2019"},"content":{"rendered":"

\"The<\/p>\n

The forget-me-not has become an Alzheimer’s Society symbol (Image: Alzheimer’s Society)<\/p>\n

The five distinctive sky-blue petals of the forget-me-not, surrounding a star-shaped flash of white and a yellow centre, have long been a symbol of remembrance, enduring love, and faithfulness. But in recent years, the charming spring flower has been given a new meaning. It was adopted for Alzheimer\u2019s Society\u2019s logo in 2016 and became the face of the charity\u2019s first annual Forget Me Not Appeal in 2022.<\/p>\n

Running throughout June, the flagship fundraising campaign encourages people to wear a blue fabric badge in memory of their loved ones with dementia<\/a> or to show solidarity with those affected. This year, the appeal is highlighting the impact of the brain-wasting syndrome on both people with dementia and their carers. A recent series of reports by the charity found that patients wait, on average, 3.5 years from the onset of symptoms to diagnosis. Almost 250,000 people in England have been diagnosed with early memory problems, but there is no national system in place to monitor progression to dementia.<\/p>\n

\"Mike<\/p>\n

Mike Parish cared for his husband Tom after his dementia diagnosis (Image: Alzheimer’s Society)<\/p>\n

Alzheimer\u2019s Society has warned that the UK is \u201cstuck in a system of delay, denial and neglect\u201d which means too many families are falling through the cracks. Chief executive Michelle Dyson said: \u201cIn the digital age of instant answers, people are still waiting far too long for a diagnosis of the country\u2019s biggest killer. That would never be tolerated in cancer care, yet for dementia it has become routine.\u201d<\/p>\n

The impact also ripples out to the army of at least 700,000 unpaid dementia carers in England who are propping up the social care system. For some, the only support available comes from charities and community groups. Today, three carers have shared the moment they realised something was not right with their loved ones, and the importance of reaching out for support.<\/p>\n

Watching someone you love change because of dementia can be a deeply frightening and overwhelming experience, compounded by a system that is failing families at every stage, Ms Dyson said. She urged people with dementia and their loved ones to reach out for support, adding: \u201cNo one should have to face their hardest moments alone.<\/p>\n

\u201cAlzheimer\u2019s Society is here to provide help through our vital support services and hope through our ground-breaking research and our consistent fight for changes to the dementia care system. If you\u2019re worried about yourself or a loved one, please reach out to Alzheimer\u2019s Society. Support is available and can make a real difference.\u201d<\/p>\n

\"Tom<\/p>\n

Tom and Mike had ‘very little help’ after the diagnosis (Image: Mike Parish)Mike Parish, 70, from Somerset<\/p>\n

Mike\u2019s husband Tom was just 53 when he began experiencing memory problems in 2008. He found it increasingly difficult to understand new tasks at work and retired from his job as an NHS<\/a> pensions manager on medical grounds three years later. But the possibility that his problems were caused by dementia never crossed the couple\u2019s minds.<\/p>\n

\u201cThere was a very clear moment that things weren\u2019t right during a simple meal out,\u201d Mike recalls. \u201cI stepped away briefly and when the food arrived, there was nothing for me. He hadn\u2019t ordered my meal. That feeling hit me hard, because it was so out of character and couldn\u2019t be explained as forgetfulness. I still didn\u2019t know it was dementia, but it was clearly something.”<\/p>\n

Then Mike began noticing other anomalies \u2014 Tom started buying handwash every time they went shopping, accumulating around 20 bottles in a cupboard. “We were losing teaspoons because he would throw them away with the yoghurt pot whenever he had one,” Mike adds. “All these small things started to add up.\u201d<\/p>\n

After seeing his GP, Tom was told the likely cause was stress<\/a> or depression<\/a>. It was not until 2016 \u2014 eight years after the symptoms started \u2014 that a neurologist diagnosed progressive supranuclear palsy and dementia.<\/p>\n

\u201cIt was such a shock,\u201d Mike says. \u201cWe had very little help after this. We were referred to Alzheimer\u2019s Society and went to some support groups which helped. Being around people who understood what caring for someone with dementia was like was incredibly important because caring for someone 24 hours a day is unbelievably hard. You don\u2019t know what it\u2019s like until you\u2019re in that position yourself.\u201d<\/p>\n

Like many spouses who find themselves suddenly transformed into carers, Mike found it impossible to switch off. He adds: \u201cThere is no time to yourself but you have to keep going. That\u2019s so difficult with dementia because you know that, unlike with other conditions, the person you love is only going to get worse and become more dependent on you. That the charm and personality of the person you fell in love with has partly gone and will continue to disappear.”<\/p>\n

He adds: \u201cDementia also brings real financial consequences, especially when caring for someone at home with little support. My early retirement meant I had a reduced income and smaller pension.\u201d<\/p>\n

Mike cared for Tom until he passed away in 2022. Despite the challenges, the devoted husband remembers moments of joy: \u201cEven when he lost speech, there was still connection. Holding hands, a smile, small gestures of reassurance. We found a way to stay lovingly connected without words, and those are the moments I hold on to.”<\/p>\n

\"Jenine<\/p>\n

Jenine and her sisters became carers for their mum Rosemary overnight (Image: Jenine Kendall)Jenine Kendall, 43, from Bristol<\/p>\n

Jenine cares for her mum Rosemary, 73, with her sisters, Adele and Syreeta. They first noticed that something was not right in 2021. \u201cWhen most people think of Alzheimer\u2019s, they think it\u2019s just memory problems,\u201d Jenine says. \u201cFor Mum, it really started with her communication. Her speech was one of the first things to be affected. Then we noticed she was losing her ability to read and write. She was always an avid reader but she suddenly couldn\u2019t do it anymore.”<\/p>\n

Rosemary was adamant that all was well, but the sisters knew otherwise. Jenine says: “We kept pushing her to go to the doctors, if not for her, then for us. Eventually she did and after around 18 months of testing, her diagnosis of Alzheimer\u2019s disease<\/a> was confirmed.\u201d<\/p>\n

That moment, when a neurosurgeon confirmed the diagnosis, is one of Jenine\u2019s most painful memories. She adds: \u201cThere had been dementia in my mum\u2019s side of the family, so we always thought it was inevitable. But nothing can prepare you for the diagnosis. It was one of the hardest moments we\u2019ve faced as a family.\u201d<\/p>\n

The sisters became their mother\u2019s carers almost overnight, taking it in turns throughout the week so Rosemary was never left alone. Each day seemed to bring a \u201cnew normal\u201d that the devoted trio was forced to adjust to, Jenine says. She adds: \u201cAdele\u2019s commitment has been extraordinary \u2014 she and my nephew moved into Mum\u2019s home to care for her day to day, and without them she would almost certainly already be in a care home<\/a>.<\/p>\n

\u201cWe\u2019ve had to support each other, as well as Mum, throughout all of this. We\u2019ve also been able to access so much help and support since Mum\u2019s diagnosis. We started going along to a local Alzheimer\u2019s Society Memory Caf\u00e9 and a Singing for the Brain group. They\u2019ve been a lifeline for us. Mum was always the life and soul of the party and these groups keep her active and sociable.\u201d<\/p>\n

Being around other people who know what they are going through has proved invaluable for the sisters. \u201cThey understand in a way no one else can,\u201d Jenine says. \u201cMy biggest advice for anyone in a similar position is to talk. Have those conversations, with loved ones or with a charity like Alzheimer\u2019s Society. There will always be someone there to listen. It\u2019s a difficult journey but you are not facing it alone.\u201d<\/p>\n

\"Ken<\/p>\n

Ken and his wife Wendy take it one day at a time (Image: Ken Lester)Ken Lester, 87, from Gloucester<\/p>\n

Ken noticed the first small changes in his wife Wendy, 88 \u2014 who also lives with Crohn\u2019s disease \u2014 around two years ago. \u201cHer conversations were a bit confusing,\u201d he recalls. \u201cShe occasionally needed support to finish sentences. Because I know her so well, I\u2019d often fill in the blanks, overlooking that it could be a symptom of something like dementia.\u201d<\/p>\n

Mum-of-two Wendy was a former accountant; she and Ken owned several businesses together. Wendy\u2019s GP referred her to a dementia specialist last year who diagnosed Alzheimer\u2019s disease. \u201cIt was a shock, and it all still feels very new and fresh,\u201d Ken says.<\/p>\n

\u201cBecoming a carer has been tough. It can feel lonely and isolating at times, especially when you don\u2019t understand everything that\u2019s going on. We try and take it one day at a time. Some days Wendy\u2019s her usual bright and energetic self, but other days her symptoms seem worse and the confusion impacts our daily lives a lot more.<\/p>\n

\u201cWe\u2019re trying to not let dementia override our lives and still enjoy going out for lunch and going shopping together. I provide support for her when she needs it but let her have her independence where possible.\u201d<\/p>\n

Ken was introduced to Alzheimer\u2019s Society and a local dementia adviser called Claire, who helped the couple find their feet post-diagnosis. He adds: \u201cI feel reassured knowing my options for support for the future as Wendy\u2019s symptoms progress.<\/p>\n

\u201cI\u2019d urge anyone to reach out for support if they need it. You\u2019ll be reminded that you\u2019re not alone and that there are kind people who understand what you\u2019re going through and can support you.\u201d<\/p>\n

Alzheimer\u2019s Society\u2019s Forget Me Not Appeal runs throughout June. Donate and wear your Forget Me Not badge this June to help beat dementia – alzheimers.org.uk\/forgetmenotappeal<\/p>\n","protected":false},"excerpt":{"rendered":"The forget-me-not has become an Alzheimer’s Society symbol (Image: Alzheimer’s Society) The five distinctive sky-blue petals of the…\n","protected":false},"author":2,"featured_media":640449,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[3557,83633,854,216063,216064,59,102,56,54,55,161660],"class_list":["post-640448","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-alzheimers","tag-alzheimers-society","tag-dementia","tag-dementia-care","tag-forget-me-not-appeal","tag-gb","tag-health","tag-uk","tag-united-kingdom","tag-unitedkingdom","tag-unpaid-carers"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/640448","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=640448"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/640448\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/640449"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=640448"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=640448"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=640448"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}