this is bbc news. we'll have the headlines and all the main news stories for you at the top of the hour, straight after this programme. this is the story of the cruelest of diseases. devastatingly hard, watching the woman that you love starting to disappear from your life. the story of struggling for care, against a failing system... push... i had to fight every single day, for years, in order to achieve very little. the social care system, everyone knows it's broken. ..and a story of love

and commitment that has spanned a lifetime. it didn't matter what kind of adversity came our way, we would get through it together, and that's what we did right up until the end. bill and jo invited us into their home, and into their lives, for one reason — to see the reality of living with dementia. it's summer 2022, and i'm in newcastle to follow the story ofjo wilson. hi,jo. are you washing up? no, i'm trying to get something out for me dinner. that's drjo wilson, phd. she was a high—flying, globe—trotting career woman. she was damn good at what she did and had an international reputation. now, it's come to this.

do you know how old you are? do i know how old i am? of course i know how old i am. how old are you? how old am i? mm. i don't know, because i haven't made my mind up yet. the isolation of alzheimer's is devastating to see. my number—one girl. this isjo's story, but it's bill's story, too. i love you to bits, don't i? he's desperate for a break, but doesn't know where to turn. stand up. help me, jo, help me. i was trying to help you. no, don't sit down again. stand up... i phoned 42 care homes to look for a respite bed forjo and didn't get one that was prepared to... to offer respite care. the social care system, everyone knows it's broken. jump in the car. in the car? yeah, we're going out to do some shopping. and we'rejoining them.

oh, no. come on, we're getting out. no, i'm not talking to anybody. i'm just going to sleep. with alzheimer's, everything gets harder... wait. jo. ..even a routine supermarket run. jo. jo, hang on. jo, this way. i'm not going shopping at all. i'm going home. don't walk away, please. jo. i have to pay. what? how was that shop? better than normal. better than normal? better than normal. it's such hard work, though. is this sustainable? well, bill wants to keepjo at home, but he's realistic. i've looked into residential care and, you know, residential care costs £1,500 a week. you heard that right. £1,500 a week. a few care homes charge less, many charge a lot more. i'm going to put our pyjamas on. it's thought that more than 200,000 people will develop the disease in 2023. there's your tablets and water.

it's bedtime forjo... you need some, because you've just put a tablet in. i didn't put a tablet in. ..but no rest for bill. it took me two years to get a care package in place forjo, and i only got that becausejo had a collapse at home and was taken into hospital. i'lljust put it over your head. but it didn't solve bill's problems. forjo, her dementia means that changing care staff and rigid timetables don't really work. and so... that's it. ..it�*s back to bill. nice and comfy. finally, jo is settled, and bill's hoping for some sleep. if only! it's now 5:05. it took me so long to actually wake up. by the time i'd seen it, it was too late. so now, the beds wet. what kind of husband doesn't put his wife first? i'm just so tired. three hours later, and we're back to check in on them. how are you?

come in, please. i'm not good today. this is what exhaustion looks like. it's devastatingly hard, watching the woman that you love starting to disappear from your life, starting just to fade away somewhere, and almost 47 years together, was leaving me. and it was like, "i don't want you to leave me. i need you here, with me." i'm so tired. i really would like you just to do simple things to help me. bill's getting jo ready for the dementia day centre. she goes a couple of times a week. a welcome break for bill... 0n the white, 78. ..and a change of scene forjo. right, eyes down i for your first house. it's time for bingo. 21. i've teamed up withjo. are you 0k, love?

it takes dedication to keep this small charity in business, forjo and for all of those who come here. it looked like there was a pool of water in here. bev�*s asked us along to see how things run. you are the chief executive. yeah. you're looking at puddles in the kitchen! wejust all have to muck in here. that's right, bev reid is the boss of the entire dementia matters operation here. as well as the day centre, the charity provides residential care — a 24/7 operation. it's not home—time yet. bev says there's a crisis in the care sector. jeremy, it shouldn't be this bloody hard. day in, day out, it feels like we're living on the edge. the finances, the challenges around worrying about income, about bills. what's your mood now? frustrated. angry. because it really does feel like a forgotten agenda. are we all right, alan? what's needed is more sams.

are we going to read back- through more memory lanes? more jameelas. john, john... more robs. everybody hungry? and that's something the government says it's committed to fixing, but better pay would surely help. simple question, why can't you pay them more? love to pay them all more. i can't pay them more because nobody�*s willing to pay me more, the organisation more. and it's money worries for bill back at home as well, with autumn around the corner. let's just see how much gas and electric we're using today. scare the life out of me. the cost of most illnesses is covered by the health service, but with dementia, families can face huge bills. there is a huge disparity between being ill — that is treatable by the nhs — and having the illness of dementia, which is local authority care. why? i don't understand.

because she has dementia, nothing's free. the government says that they've increased funding into research for the latest treatments... you're going to have your tea now. ..but huge bills, rising costs, staff shortages mean a care system stretched beyond capacity. we need the government to put this top of the agenda, because if you think about what happens to people with dementia, currently, the diagnosis is late and the care and support that they need is not there. and what happens is that people will end up in hospital, often in crisis. this is a crisis that we need to support and focus on now. the government says they've set aside £17 million to help those waiting for a dementia diagnosis. if things sound bleak, well, they can be. hello! but for bill and jo, there are positives too. a midweek night with the family.

oh, what have you got? a bond that cuts through the fog of dementia. poor gerald felt so sad... steve, niece debbie and their kids, creating memories with auntie jo. at the beginning... it's so special to see that, - and heartbreaking at the same time, to know that it will come to an end at some point soon. i but i think if anybody can help . bill through whatever may come in the future, it'll be them two little children. - and there's something else, too, billand jo have each other. if you had jo back for a moment, a lucid moment, what would you say to her, bill? i love you. nothing else. we start our programme tonight with the story of one family's experience of living with dementia... we broadcast our first story about bill and jo on bbc news in october 2022.

jo has alzheimer's disease. it struck a chord... i had the most phenomenal worldwide response to that. letters addressed to, "bill and jo wilson, bbc news story, newcastle upon tyne". ..so we're back, to see how they're doing. people would be thinking that things couldn't have got worse for bill and jo. i'm sitting here today, jeremy, saying, things have got dramatically worse. worse because the carers who were coming twice a day... up you get. ..are now not coming at all. and the sad thing was, they had onlyjust recognised that we needed more care. they actually withdrew all care? everything, everything. newcastle city council told us the care provider they use simply don't have the people to care forjo. the system has writtenjo off, but not onlyjo, me too. and how many other thousands of people is the system

writing off now? are you 0k? i'm 0k. well, not really 0k. for bill, this is a new low. so bev�*s come to the rescue. a plan to help take the pressure off. my mental and physical health are deteriorating rapidly. so now, after day care, jo is taken to the residential unit upstairs at the bradbury, where she has tea and she's dressed for bed. it's not mine, it hasn't got her name on it... but after that, it's back in the car... seatbelt on. ..and every night, bill copes alone. it's becoming too much. things have got to the point where i really have to consider residential care forjo. it's not what i ever wanted to happen. but the bradbury has its problems too. they've prepared a new residential care bedroom perfect forjo, but still empty. we can't have jo here

as a resident until all the approvals process is complete. bureaucracy means frustrating delays, and all at a time when there's a national shortage of care home beds. it'sjust a sin, really. the system is letting people like jo down at the moment. hello, are you all right? can i come in? yes. why not? betty. approval comes from the care quality commission, which says it can't compromise safety for speed. get you tucked in. the government says it's making a huge investment in social care. night—night, then. there is no tomorrow forjo and me. 0ur tomorrow has come and gone. night—night. it's the new year. i'm back in newcastle. hello. greetings. there's word from bill. trouble, i hear? bad news. i'm just beyond... are you? beyond everything.

jo's had a nasty bout of flu... i'm going round and round in circles. ..and the cruel grip of alzheimer's is tightening, as the days and weeks slip by. today, jo's childhood friend christine is here to help. little wee sip. for this internationally—recognised, successful woman, daily life is now a huge challenge. i thought i was beyond exhausted the last time i saw you, jeremy. that was a walk in the park, compared to where i am now. bill now accepts thatjo needs full—time care and wants her at the bradbury centre, with bev. but bev�*s still waiting for confirmation that the room can be used. can i have a little i listen to your chest? is that 0k? jo is struggling. bring that top up. bill has called the doctor's surgery and caroline's here to help. you're doing really good. at this point, with no residential care place, a hospital admission could be on the cards. your heart is a wee bit fast.

clearly, bill thinks that's a bad idea. when the oxygen's that | low, you would normally pop to hospital. right, and i'm going to say no. i thought you might. but then, there's a call... hi, bill! ..from bev. hi, bev. you're on speakerphone. confirmation from the regulator that the room forjo can now be used. bill, we're ready when you're ready. 0k. is this a green light now? yes. sojo can move into that room? yes. brilliant. it's a game—changer. huge relief, but heartbreak too. i've kind of built up to this moment, but when someone says it out loud, i'm devastated. because it's real? yeah. and... i don't know what to do. well, i know what i have to do. i don't have a choice. but... it's so hard. it's so hard.

moving jo here, into residential care, means she's less likely to need a costly hospital bed, and bev says she's ready to do more to relieve pressure on the nhs. we could extend and increase our day services by opening over the weekend. just to be clear, if people are here then, for the most part, they're not in a hospital? exactly. dementia takes so much from so many. for bill and jo, the reality is that this weekend will be their last days at home, under one roof, after 47 years together. a car'sjust outside, waiting for you. it's monday morning, the 16th of january, 2023. a new week, a new hope. one big step, jo. after months of waiting, jo is finally leaving her home for a place in care. bev is here to welcome her.

how's she done today with food? this is desperately—needed support. jo can now settle in. here in the bradbury centre, starting her residential care. she's in the right place. but then, three days later, we get an urgent call from bill... thank you for coming. ..so we've come straight back to see him. wouldn't be anywhere else, mate. so sorry. it's the saddest news. jo is gravely ill. there is more to life than this disease. look beyond it. look at the person who you love so dearly. my special girl. this was meant to be a new chapter. i've only got one thing on my mind, jeremy, and that's jo. she's got a couple of days left. i don't intend moving from her side. that's where i belong. christine is here to help. you've got everybody here who loves you.

bev and the staff here have set up a bed for bill right next tojo. you're safe, but you know something? if you're ready to go... ..let go, because i'll be ok. we receive her body into this church this morning. on behalf of everyone, we offer our condolences to we receive her body into this church this morning. on behalf of everyone, we offer our condolences to bill. drjo helen wilson died at 1:30 pm on saturday, the 21st of january, 2023. she was 69 years old. may she now share with christ in eternal glory. drjosephine helen wilson, orjo, as we all came to know her... bill asked me to read his words tojo. jo's always been strong and successful, passionate

about her career and passionate about her family. she will be missed so much, by so many. the lord make his face to shine upon her and be gracious to her. i remember the strong, independent woman who knew exactly what she wanted, and it was myjob to make sure she had that right up until the end. and it was to that end that bill and jo wanted us alongside them, to show their story of dementia. i could not have asked for a better eulogy. it was fantastic. may your mercyjoin her to the angels in heaven. dementia, we all need to understand it. need to understand the real cost of it. what it means to families.

for so many people, the same thing will be starting today. they'll be just starting on this process today. it's bill's first time back here at the bradbury centre sincejo died. nice to see you. all right? yeah. surrounded by love and memories. all of us, we really missjo. she had real presence. the raised eyebrow, the wry smile, her sense of humor. she was a brave and admirable woman. it was honest and loving care. care that meant so much. a tribute that bill wanted bev to hear. an absolutely unequivocal, huge thank you. i owe my life to bev. i may well not have been here now talking to you, had it not been for her. to me, she'sjust

an absolute star. i feel really humbled by what i listened to there. i always feel i should do my very best every day for the people that need us. thank you for being so kind and saying those wonderful words. i won't ever forget them. thank you. my pleasure. bill is now looking ahead... whatever i do going forward will be done injo's name, and it has to bejo's legacy. ..committed to change, so thatjo didn't die in vain. i'm surejo's looking down on me now saying, "you have one job to do, and that's to drive the dementia agenda forward. don't you dare fail at this. that isn't an option." so bill's teamed up with bev, the boss at dementia matters...

we're still on a journey, aren't we? we have a lot of work to do. ..to try to improve the lives of dementia patients and their families. nobody should be suffering this dreadful and difficult time on their own. it's a cruel and awful disease. we need some political will to cut through that fog of, it's too big, it's too expensive. how do we take it forward? there are now plans for a new strategy in england to try and improve patient care. in the meantime, families struggle to navigate the system, desperate to give their loved ones the care and dignity that they deserve. it was a special love story. didn't matter what kind of adversity came our way, we would get through it together. and... and that's what we did

right up until the end. hello there, good evening. following a wet march across england and wales, plenty of dry weather. england and wales, plenty of dry weather-— dry weather. these weather watch pictures _ dry weather. these weather watch pictures in _ dry weather. these weather. watch pictures in lincolnshire more sunshine through the next three days. i pressure very firmly in charge. an area of high pressure towards the south—east in the east, so cooler here in the high—pressure is blocking these weather systems attempting to push east, and it's kind of known adverse weather front is we head through monday, so it will stay

dry across the board. a lot of sunshine around, but claudia and brazier across northwest areas of scotland and northern ireland but even here some sunny spells. roxy basing coasts and patchy cloud towards the far south and east, temperatures between ten and 12 monday into tuesday, clear skies, light wind and again another we head into tuesday morning, you can see from the tone but mother towards the north and west with the cloud and breeders. this is the position of the high—pressure on tuesday. there is a weather front moving into north—western areas of scotland so we start to see the cloud they can hear and wind is set to pick up as well. cloud across northern ireland. as the weather front bumps into the high—pressure, it's fizzling out and it's been blocked, not moving far eastwards. the lion's share of the sunshine. top temperatures

between 11 and 1a celsius. a little cooler for north facing coasts. into wednesday, the weather pushes further eastwards. again, for the vast majority, we should stay dry across england and wales. most of the rain is across northwest england in north—west scotland. temperatures will pick between 11 and 13 once again but it's claudia, wendy and some outbreaks of rain towards the west. then the focus of that rain moves further east as we head into thursday. still quite far allay me geologically speaking. it is starting to clear these western areas. sunshine emerging across northern ireland and western scotland through northwest england and western wales. then we head into the easter bank holiday weekend and good friday, we start to see the

high—pressure building back in but it's looking drive. more cloud across much of england and wales on friday but it should start to break up, the rest of the sunshine i think the scotland and northern ireland in north—west england, temperatures responding, up to around 15 celsius, even when we have the cloud, it should start to break up but a bit cooler towards the north sea coast, i pressure hanging on. bank holiday monday, another weather front starting to approach. by then we could start to see some outbreaks of rain yet again. it does look as if the vast majority of the bank holiday weekend will be dry. more cloud around but sunny spells emerging. at times you can see around about the average or just slightly above. enjoy the sunshine, goodbye.

welcome to bbc news. i'm vishala sri—pathma. our top stories: one of russia's most influential pro—kremlin bloggers is killed in an explosion at a cafe in st petersburg. vladlen tatarsky wrote on the telegram platform from the frontline — supporting the russian invasion of ukraine. finland turns right. the opposition claims victory in the general election. prime minister sanna marin concedes. paris says �*non�*. the french capital votes by a huge margin to end on—street rentals of e—scooters. and ticked off. the new york times loses its verified status on twitter, saying it won't pay for the privilege.