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My father was diagnosed with Alzheimer's Disease and we had been unable to get a diagnosis from the GP initially. Age UK and the Alzheimer's society were extremely helpful and I would advise that these are the people to turn to. He was eventually referred to the hospital and received a diagnosis.
He was looked after at home and had carers to help with showering twice a week but as COVID struck the carer voiced that he should be looking after poorly people which proves there is a lack of training and understanding. We arranged for him to attend a day centre that we paid for £50 for a day and extra for transport which again raises the point a lot of people would not be able to afford this.
My father's condition progressed and he was sectioned under the mental health. He was in hospital for a number of months and slowly deteriorated. He was fully mobile when admitted but came out in a wheelchair. He remained on a section and it was decided to transfer him into a nursing home that had mental health status. The care worker was excellent and luckily he went into an agreed place to live but if there had not been a vacancy there he would have been placed in a different place and this could have been out of town which then poses a problem for visiting for some people.
We are also lucky that one of our MP's in our town is Debra Abrahams who is joint Chair of the Alzheimer's and Dementia Group in Parliament other people may have MP's with little experience of the disease.
During the time before my father passed away after COVID restrictions had lifted we visited my father and we lived in the here and now as with any illness people change as their illness progresses. We played him music and we sang the songs for him. We laughed which made him laugh to. We made memories and tried to have fun with him. I fed him and he used look at you and often spit the food in your direction and I would shout duck he's spitting and I would say that's naughty but smile at him then he would smile.
The two days before he passed away he opened his eyes which he had not done properly for ages and he told us he loved us.
We regard those as special memories. We had had a time where we could not see him due to Covid so make the most of the time you have left with your loved ones.
I am sorry but the advert about a person keep dying is not true in my mind they only have one passing and that is at the end the rest is just a progression of a disease like any other and remember there is always somebody who understands and to talk to.

My wife has Alzheimer's Disease and I have cared for her full time since the symptoms became apparent in 2019 and her diagnosis in 2021.
I've learned some things I'd like to share.
Firstly, it's not the fault of the sufferer that they have dementia. It's not due to a lifestyle choice such as nicotine, alcohol, hard drugs, or anything else.
Neither is it your fault.
Initially, I made the mistake of doing everything for my wife, which made her more dependant on me than she might have been at that stage.
I thought I could manage everything myself without outside help - another mistake. Do ask for help, it is available and is not a sign of weakness..
Learn how to look after your own mental, physical and spiritual health.
Sufferer and family all are affected but in different ways.
Be prepared for friends to fall away, they simply don't know how to deal with it.
Lastly, don't feel guilty if you need respite, even a few hours off each week becomes a blessing. You need to recharge your batteries because the fight isn't over.

My lovely Dad passed away this year after living with Alzheimer's for around 8 years, with the latter 3 years living in a care home. Nothing can prepare you for it as a family member who finds themselves with the responsibility of navigating their loved one through this awful disease; the sadness, the grieving (many times over, step by step), the frustration, the fear, the anxiety, the confusion, the guilt.

None of us knows how our lives will end, but if you have Dementia, you have the added burden of fighting for care funding and not really knowing what to do or what you're entitled to.

People who haven't been through the Dementia journey with a loved one, may think it's an extreme form of forgetfulness. It's not ... it's everything, both mental and physical decline. My husband and I make a point of calling it a Disease of the Brain ... it's basically your brain 'packing up' .. and the way an individual's brain 'packs up' gives them their unique Dementia experience. Why should people with a brain disease be treated differently in terms of care, than those with heart, liver, kidney problems... broken leg .... ? This can't be ignored any more ... as we all live longer and survive other illnesses, many more of us will end our days with Dementia.

My mother, like my grandmother, developed Alzheimers in her 80's. My father and I cared for her at home. Her personality changed and she often did not want to wash, or even walk about the house .She began to not recognise her husband , which was very upsetting. All her memories slowly were lost . Some years after her death my grieving father showed signs of vascular dementia and strange signs which were eventually recognised as Lewy body dementia . He was acutely aware of his decline and decided to stop eating and drinking after several debilitating episodes of delirium and delusions . Dementia is not just about forgetting things or repeating things .

Many family and friends have dementia and have died at home, in a hospice or in a hospital. Diagnosis takes too long. There is no effective treatment abundance it is very distressing to watch a loved one get worse. Access denied to nhs, education, basic checks for sight, hearing and dental care denied, no home visits, no personal budget, no social care, no transport, no accountability, no accessibility, no communication, no care and emergency plan, no statutory services yet overcharged for everything, inadequate benefits, inadequate pensions, no customer service with human, impossible to use phone, tech, AI, hone monitoring equipment, no falls prevention, not on priority register, no emergency alert if get lost, invisible to any system, housebound ignored, infection prevention eg vaccinations ignored, no health check, no annual review, confusion ignored, memory loss ignored, carer denied, unpaid family have to do everything until transfer elsewhere for safety. Disability discrimination, ageism, ableism, racism, sexism, post code lottery and increasing health inequalities. Early help and referrals saves lives and costs from hospital admissions via A& E. There should be equality, inclusion and diversity. Safe places. Mobility aids denied, stair lift denied, home adaptions denied, no social prescriber, no citizens advice, no accessible toilets, years of waiting due to covid backlog, strikes, government failure, covid cover up, people just don’t care. There needs to be health first policies and integrated care from self referral or single point of access. Charities, public, patients, carers, families do more. There needs to be compulsory national training. Every life should be valued. Memory events and bereavement support should be available. More medical research for prevention and better treatments. Mental health services asap. Ageing cannot be stopped. Dementia can occur at any age. Terminal illness needs better care. What care would you expect for your loved one? Positivity, humour and fun should be available. Holistic care, animal therapy, sensory stimulation, creative activities, dance, friend, chaperone, witness, speak up guardian to avoid neglect and abuse. Theft from patients eg jewellery, money, phone should never happen. 24 hour communication with security, cctv and consultant cover. Councils are ignoring people. GP surgery denies access. Landline phone is unsafe. Patient must be seen in home or GP surgery. Register patients for safety. Respite care and short break holiday should be available. Outstanding care at first contact Patient and family know best