Sussex dad with early-Alzheimer's in social care fight because he's under 65, wife urges PM to act

• Watch in full: Natalie Hemsley speaks to ITV News Meridian about Keith's illness and their experience with the social care system

The wife of a man who has advanced early Alzheimer’s disease is pleading with the Prime Minister to improve the provision of social care, after he was placed in a home 90 minutes from her because there was no alternative.

Keith Hemsley, from Burgess Hill in West Sussex, was 50 when he started to show symptoms with his loved-ones difficulties in him getting words and phrases out, for example saying ‘chips and fish’ rather than ‘fish and chips’.

It took six long years for the father-of-three, who loved music, running and had an infectious sociable personality to be diagnosed, delaying any potential medication which may have slowed down the progression of the disease.

His wife Natalie said, “One of the letters that I got from the neurologist was that some of Keith’s problems were because he was so obsessed with there being something wrong with him, that he was causing the issues himself.

“Being deprived of the possibility of taking medication that may have helped, it doesn’t cure it, there isn’t one, it may have meant the quality of life might have been better.”

At 58, Keith is now 40 miles from his wife of almost four decades, because the majority of homes locally only cater for people aged over 65, an issue across the country.

Natalie said, “The resourcing team were looking and just kept saying there's not any places. A lot don’t because of demand and cutbacks and things, or they just couldn't meet Keith’s needs.

"Being Keith’s age with advanced Alzheimer’s according to social care does not go together and therefore there's not the choice out there.

“I’m not retired. I've got to go back to work. So how do I work full time and find three hours to go there and back once or twice a week, then spend time with him.

"He's in an advanced stage, time is running out, and I don't get to spend valuable time for both me and emotional support for Keith.

“We don't say to someone, oh, you've got cancer, how old are you? Oh, you're 30. I'm very sorry. We can't provide the care for you because you're only 30. But that is happening up and down the country and that definitely needs to be addressed by the Prime Minister."

Dementia UK estimated 70,800 are living with young onset dementia, which makes up 7.5% of the 944,000 people living with the illness in the UK.

Numbers have increased over the last decade which is put down to greater awareness and understanding of symptoms, though the charity acknowledges that getting a diagnosis at a young age can be more challenging because it’s often confused with other health issues.

It’s unclear how many people aged under 65 struggle to find a suitable home but it’s widely acknowledged that younger people and their families face challenges, with the majority of care homes only able to take people in from their mid-sixties onwards.

The result is people ending up in noisy, busy hospitals where not all staff are specifically trained to deal with Alzheimer’s, an environment which can lead to a person becoming severely agitated and confused.

Keith spent three months at the Princess Royal in Haywards Heath this year when he was no longer able to be looked after at home.

Between Accident and Emergency and an acute ward he suffered bruising, which Natalie says highlights how hospitals aren’t best placed to manage the conditions and why greater social care support is needed.

"As good as the doctors and nurses are they weren’t meeting his needs, so there we are again, the care system, a hospital, is failing people massively."

Gail Byrne, Interim Chief Nurse, University Hospitals Sussex NHS Foundation Trust said, "We are very sorry for the distress experienced by Mr and Mrs Hemsley.

"We are investigating their concerns and will share our findings directly with them. We are also happy to meet with them to discuss their experience and any improvements we can make.

"People living with dementia and other complex mental health needs can require highly individualised care and support, and an acute hospital is not always the most appropriate environment to meet those needs.

"There are occasions when patients may present a risk to themselves or others, and in these circumstances restrictive intervention may be used only as a last resort to ensure the safety of patients and staff. Our staff receive specialist training in supporting patients who are distressed, including those living with dementia.”

What’s compounded the immense emotional strain is the horrifying sight of more bruises on Keith which have appeared since being at his new home, with safeguarding concerns raised to West Sussex County Council.

The authority told ITV News it takes all safeguarding concerns seriously, and whilst it doesn’t comment publicly on individual cases, it has a statutory responsibility to respond to safeguarding referrals and will work with relevant partners to assess concerns and take appropriate action to protect adults at risk.

Natalie’s faced a battle in her husband’s name for eight years, solidify her strong belief that the system is seemingly ill-prepared for people like Keith.

Her impassioned plea urging Andy Burnham, his Government, and all political parties is that they the issue of social care seriously to ensure there is greater provision to support people with early-onset dementia.

Natalie said, "We need to address it and we need to address it now, for everybody, not just people who are retired.

"It’s going to be too late for my husband. I know that, but if that can stop someone else going through what we've gone through with young onset dementia, then I feel, at least I’ve done my job."

A Department of Health and Social Care spokesperson said, “Alzheimer’s is a devastating disease, and our thoughts go out to Natalie and Keith. This Government is determined to strengthen the support that is available both to individuals affected by Alzheimer's, and the family members who look after them.

"We are bringing forward the timetable for Baroness Casey's commission on reform of the social care system, with support for dementia as one of the central priorities for that work, and we are appointing a National Dementia Tsar to help drive forward that progress, as recommended by Baroness Casey."

"This month, we also announced the investment of £33 million through the Dame Barbara Windsor Dementia Goals programme to support clinical studies for new dementia treatments, and we are publishing the first ever Modern Service Framework for Frailty and Dementia to deliver rapid improvements in quality of care."

• Natalie tells ITV News Meridian's James Dunham it's vital everyone with Alzheimer's has access to the right level of support

A West Sussex County Council spokesperson said, "We recognise the challenges families can face when arranging care and support, particularly when navigating complex health and care needs.”

"Across the country there are fewer care services for people under the age of 65 with dementia, as younger onset dementia is less common and individuals often require more specialist support.

"When identifying care placements, every effort is made to find suitable provision as close to home as possible. However, this must be balanced with ensuring a person's assessed needs can be safely met by a provider with the appropriate expertise.

"We would encourage anyone caring for others to seek support if they need it. Help and advice is available through Carers Support West Sussex, as well as through the county council's Care Guide, which provides information on care and support options available across the West Sussex."

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