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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

I have both my parents had dementia, both got to the point where it was hard to tell if they really recognised me or their other children, one eventually got to the point of not recognising any of their children. It was very painful not to be able to connect the way we used to when I visited, not knowing whether my visits were of any benefit but still feeling that I must visit, that I cannot betray that emotional bond.

My father has dementia. His partner has refused to let my siblings and I do anything to help make his life more comfortable in his own home. No consideration for his condition or the level of care that he needs. We have been cut off from him. We have no way of reaching him. She won’t allow adjustments in the house or a screen led communication through the television. He is completely isolated and sees no one apart from her. He asked my sister & I to do everything to help him stay in his home and yet his partner denies him this.

My wife, Jenny, was diagnosed with mixed dementia 4 years ago. She was an exNHS Practice Manager. There was steady deterioration in memory and comprehension over the next three years. She lost the ability to read or write, only recognising me sometimes. Helping her wash and dress was a problem. Incontinence became double incontinence in the bed, all over the house or if we went out. For night visits to the loo an alarm on the bed gave me warning, but if she got there first she would not remember to take down her nightclothes. She hated using safety devices and fell several times.
A morning carer helped get her washed and dressed, but she would not always co-operate. Equally she might push me away if I tried to give her a kiss or cuddle, not remembering who I was. Sometimes, when I was working on the computer upstairs, if I had not locked the back door she would wander down the road looking for me. Eventually she went into a first-class care home, she often became terribly upset when I had to leave her, and I also became distressed remembering our 61 years of married life. She passed away in July 2024, aged 83. I am aged 87 and we were always very close.
Another worry is the sheer cost of care, in our case c£8,000 per month. In the eyes of the NHS Jenny was not ill requiring medical treatment and therefore did not qualify for financial help. It causes great worry and distress to others. Would the approach be different if an affordable treatment was found and, perhaps, needed monitoring? As it is, the worry of a seriously ill wife and trying to work out how to pay for her care is enough to break both of us.