\n<\/p>\n
W<\/span>hen Maxine Linnell, 78, a retired psychotherapist living in Leicestershire, learned that she had dementia four years ago, the diagnosis proved less challenging than some people\u2019s reactions. \u201cWhat was striking was how many people\u2019s attitudes changed almost immediately \u2026 they stop seeing you as a person and see only dementia, some professionals included. Like this is the end and everything after will be devastating.\u201d<\/p>\n The assumption that you go overnight from diagnosis to late-stage dementia isn\u2019t confined to family and friends. Julie Hayden, a nurse and social worker from Yorkshire, was diagnosed nine years ago at the age of 54, long after sensing that something was wrong but being constantly told that it was depression or menopause; her doctors still associated dementia with old age and didn\u2019t consider that she might have had young onset. \u201cAt the point of diagnosis,\u201d she recalls, \u201cmost of us are told: \u2018Well, it\u2019s dementia, nothing we can do about that. Best go away and get your end of life affairs in order.\u2019\u201d<\/p>\n George Rook, an ex-teacher living in Shropshire, was given three pieces of similar advice (all three of which he\u2019s broken) when he was diagnosed in 2014, at the age of 63. \u201cFirst, don\u2019t take risks. Second, don\u2019t get tired. Third, prepare. Don\u2019t take risks is just an absurd thing to say. You don\u2019t take stupid risks, but you take risks just by living. [There was] no encouragement to continue to socialise, keep active, learn new things, volunteer.\u201d<\/p>\n People diagnosed with dementia are still routinely being advised to disengage from life as they know it and prepare to die \u2013 something that Kate Swaffer, an internationally known Australian dementia campaigner, calls \u201cprescribed disengagement\u201d \u2013 or given a bunch of leaflets, without any genuine support beyond groups in which many people living with dementia feel patronised.<\/p>\n After diagnosis, Swaffer immediately lost her job. So, too, did Hayden.<\/p>\n <\/span>Kate Swaffer, at Adelaide University\u2019s Magill campus.<\/span> Photograph: Sia Duff\/The Guardian<\/p>\n Linnell, Hayden, Rook and Swaffer are all dementia activists, people living with dementia who are angry about the stereotypes surrounding the condition and the lack of support after diagnosis. It is a hybrid of ageism and ableism that combine, they believe, to perpetuate fear and anxiety.<\/p>\n Instead of disengaging, they choose to engage even more vigorously: all four have thrown themselves into dementia activism, establishing new groups (in Hayden\u2019s case, the Young Dementia Network; in Swaffer\u2019s, cofounding Dementia Alliance International) or becoming active members of existing ones, like Deep (the Dementia Engagement and Empowerment Project), a network of people with dementia across the UK. All of them, \u201cexperts by experience\u201d, are actively involved in research projects such as Living Well With Dementia. Swaffer is doing a PhD.<\/p>\n Certainly, dementia has become the most dreaded condition of our age; a receptacle for all our phobias about ageing and dying. Recent research found that half of people in the UK now fear dementia more than any other health condition.<\/p>\n Before she was diagnosed herself, Linnell had friends and relatives who lived, and died, with dementia. She noticed that, when someone was struggling for a word, other people would immediately step in to say: \u201cOh, but I forget things all the time.\u201d (I think back ruefully to how often I\u2019ve reacted this way.) \u201cThat made me aware how deep this anxiety is,\u201d she says. \u201cThere\u2019s this shame about forgetting a word and reassurance needed among almost all of us.\u201d<\/p>\n One reason for the extent and depth of the anxiety is how rarely we tend to see or hear from people actually living with dementia. Instead, its depictions almost invariably feature either carers talking about the burden they carry, neuroscientists searching desperately for a cure, or advice about how to \u201cprevent\u201d it \u2013 all of which amplify the fear, with the prevention (with its list of things each of us should be doing) adding more than a whiff of victim-blaming.<\/p>\n When we see people living with dementia in popular culture, they\u2019re almost always at a later stage, and conforming to stereotype (think of the confused, wandering, white-haired elderly person) \u2013 despite some more complex recent storylines such as the character of Nigel Bates in EastEnders, a rare depiction of young onset dementia. For the dementia activists I interviewed, the single worst reinforcer of stigma and fear was the 2024 Alzheimer\u2019s Society ad, The Long Goodbye, with its strapline: \u201cWith dementia, you don\u2019t just die once; you die again and again and again.\u201d<\/p>\n Hayden was one of 10 activists in a steering group that the Society asked to preview the ad. When all 10 responded that it was irresponsible and would devastate anyone newly diagnosed, they were ignored. Linnell was so disturbed by the ad that she started a petition, titled: \u201cStop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities.\u201d<\/p>\n In it, she argued that: \u201cAlongside my dementia, I lead a fulfilling life and actively contribute to my community. I\u2019m not alone in this; countless others diagnosed with dementia live meaningful and active lives. Some do that for many years after diagnosis. We may need help and support, and we will need to adapt our lives \u2026 We have a voice, and we need that voice to be heard.\u201d<\/p>\n The Alzheimer\u2019s Society, in response, says: <\/strong>\u201cThe aim of The Long Goodbye advert was to show the unvarnished, devastating reality of dementia and to raise awareness and understanding among the public. For too long, the hard reality of living with dementia, especially in the latter stages, was hidden from view, making families going through it feel unseen, unrepresented and unsupported \u2026 We believe we would be doing those who are affected by dementia a disservice if we were to sugarcoat the reality they face every day.\u201d<\/p>\n Don\u2019t they have a point? Aren\u2019t the dementia advocates exceptions and, in denial, disavowing their future selves? After all, most of us know (or know of) incontestably tragic late-stage cases like the one in the ad \u2013 the mother who can no longer recognise her partner or children. Even this doesn\u2019t mean a life without quality or meaning. The person with dementia can still be loved and cared for, and even find joy.<\/p>\n <\/span>\u2018At the point of diagnosis, most of us are told: there\u2019s nothing we can do\u2019 \u2026 Julie Hayden. <\/span> Photograph: Dementia UK<\/p>\n Dementia activists certainly don\u2019t need reminding about what the later stages look like. \u201cAs activists, we\u2019re very aware that there are people much further along the line than we are, who perhaps have lost their voice,\u201d says Hayden. \u201cAnd we\u2019re constantly campaigning with and for them.\u201d Hayden herself was involved with St Andrew\u2019s Healthcare in co-creating care plans with carers and the involvement, as far as possible, of the person diagnosed. This is now being rolled out across a number of care homes.<\/p>\n Their chief argument is that late stage, as depicted in the so-called \u201ctragedy narrative\u201d, isn\u2019t the only dementia story around, although it\u2019s often portrayed as such: they want to expand the range of images, not replace one with another. They\u2019re also frank about the challenges they face. Hayden, like Rook, has problems with balance, and uses a wheelchair. Stress can have a big impact. Swaffer and Linnell both temporarily lost language; Swaffer when her house recently flooded and Linnell when moving house. Numbers and dates can prove elusive.<\/p>\n At the same time, Hayden believes her activism has served as a kind of \u201cmental gym\u201d, helping her develop \u201cnew neural pathways\u201d. Swaffer says that new learning in her case aligns with the evidence on neuroplasticity that, with stimulation, the brain will keep trying to find new connections around the damage from dementia. Linnell goes further, arguing that prescribed disengagement \u201cmay hasten what people are expecting to happen \u2026 If we all learned how to adapt, if we found other ways of communicating, if we had more support, would they go into later stage so soon?\u201d<\/p>\n Yet, so entrenched are the othering stereotypes of the person with dementia, that all of these activists have repeatedly faced the accusation, and sometimes online abuse, that they \u201cdon\u2019t look like you\u2019ve got dementia\u201d.<\/p>\n What is it that they want, beyond a change in attitude? Swaffer puts it succinctly: \u201cHow do we empower and enable people to live as well as possible, for as long as possible, with as much autonomy and independence as possible?\u201d This should include, they say, access for everyone to an Admiral national dementia nurse (supported by the Dementia UK charity); dementia training \u2013 with lived experience in its design \u2013 as part of medical training; and a clear, national, properly funded dementia pathway. <\/strong>Christine Bryden, another Australian dementia activist, summed it up in the title of her manifesto on the subject, Nothing About Us, Without Us!<\/p>\n They all make the telling distinction between what happens after a person is diagnosed with dementia, compared with cancer or stroke. If you develop aphasia after a stroke, for instance, you\u2019re immediately sent for speech therapy \u2013 but this is rarely offered to anyone with dementia having problems with speech. Swaffer describes dementia as an \u201cacquired disability\u201d and argues that people diagnosed with the condition should be given the same resources and assistance available (at least in theory) as people with other disabilities \u2013 the kind of disability assessment and support that Adelaide University, where she is doing her PhD, has provided her.<\/p>\n <\/span>\u2018The advice was absurd\u2019 \u2026 George Rook. <\/span> Photograph: Dementia UK<\/p>\n \u201cEvery person with a diagnosis of dementia is supposed to have an annual dementia review with someone who knows about dementia in their GP practice,\u201d says Rook. \u201cMost people don\u2019t get that and, when it does happen, it\u2019s rarely actually seen as useful because the GP knows a lot less about it than I do, by their own admission.\u201d More useful are schemes where people living with dementia act as \u201cpeer tutors\u201d, as Rook has, to the newly diagnosed.<\/p>\n Critically, because of the prevailing view that people with dementia can\u2019t learn new skills, rehabilitation is seldom offered, despite its documented benefits \u2013 including cognitive rehabilitation \u2013 for people living with dementia.<\/p>\n It\u2019s now nearly 30 years since the British psychologist Tom Kitwood wrote his groundbreaking work challenging the biomedical model of dementia. Decrying the dehumanisation of people with the condition and exploring the \u201cpsychodynamics of exclusion\u201d, he argued that \u201cthe brain is now recognised as an organ that is capable of continuing structural adaptation\u201d and called for \u201cperson-centred care\u201d, involving sensitivity to the individuality and subjectivity of those living with dementia.<\/p>\n Although today many care homes call themselves (after Kitwood) \u201cperson-centred\u201d, they rarely put his real ideas into action. And, because of the dominant idea that dementia quickly obliterates everything that a person has been \u2013 including their past selves, hopes and experiences \u2013 dementia advocates face a kind of Kitwood Groundhog Day, having to remind others \u2013 again, and again, and again \u2013 that they remain human beings.<\/p>\n \u201cJust imagine you were diagnosed,\u201d says Linnell. \u201cWhy wouldn\u2019t you feel upset or depressed? Can you think of any reason why you wouldn\u2019t feel anxious? They\u2019re not symptoms, they\u2019re healthy responses.\u201d She wants people to be offered counselling or therapy by practitioners who haven\u2019t bought into \u201cthe story\u201d.<\/p>\n Rook wonders whether he and his fellow activists may have to lie down in front of the Houses of Parliament, as the suffragettes did, to make people realise that this is a human rights issue. Linnell \u2013 who suggests that \u201cremembering someone\u2019s name isn\u2019t such a big deal; our memory isn\u2019t who we are\u201d \u2013 wants us to cultivate a \u201cdeep listening\u201d so that we\u2019re able to respond to people with dementia even when they\u2019ve lost speech.<\/p>\n She recounts remarkable stories of improvement in function when this happens. Her friend, for example, whose mother was no longer able to move, speak, eat or drink for herself, learned to \u201clisten\u201d to her mother\u2019s movements, encouraging her to expand them, even in the small lifting of a finger. Eventually, her mother began to speak again and they were able to have meaningful conversations in the final days of her life. \u201cWe underestimate what\u2019s possible,\u201d says Linnell, \u201cbecause of the idea that the person has already died.\u201d<\/p>\n Together, dementia activists are reframing this condition; opening a portal to our understanding of the condition in a new way. Listen to James McKillop, a Scottish retired civil servant who discovered an ability to write lyrics after his diagnosis in 1999. The title of one of his songs sums things up rather eloquently: Diff\u2019rently the Same.<\/p>\n","protected":false},"excerpt":{"rendered":" When Maxine Linnell, 78, a retired psychotherapist living in Leicestershire, learned that she had dementia four years ago, the diagnosis proved less challenging than some people\u2019s reactions. \u201cWhat was striking was how many people\u2019s attitudes changed almost immediately \u2026 they stop seeing you as a person and see only dementia, some professionals included. Like this<\/p>\n","protected":false},"author":1,"featured_media":50206,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[270,6626,11602,1211,529,437,1299,2191,4050,13006],"class_list":{"0":"post-50205","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-change","9":"tag-dementia","10":"tag-determined","11":"tag-diagnosed","12":"tag-meet","13":"tag-minds","14":"tag-peoples","15":"tag-rebels","16":"tag-treated","17":"tag-youre"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/50205","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=50205"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/50205\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/50206"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=50205"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=50205"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=50205"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}