Dementia is a growing concern in the UK, with around 1 million people currently living with a form of dementia1. The financial burden is significant—dementia care costs the UK £36.7 billion annually, with social care alone accounting for £16.9 billion. For individuals and their families, the impact is equally profound, with the average person spending £100,000 on dementia care over their lifetime2.
Jackie’s story
Image is a stock photo for illustrative purposes.
Chris Wells agreed to share his and his wife Jackie’s story with us and their journey navigating the complexities of care and funding for Jackie, as they faced the challenges of her dementia.
Chris and Jackie shared a wonderful life, meeting on the 1 January 1966, going on enjoy a long and happy marriage that brought them two children, Martin and Sarah.
They were thoroughly enjoying their retirement, the freedom of an empty nest and starting to look forward to the next chapter in their lives when Jackie began to experience symptoms of dementia at the age of 73 in 2020.
Chris and his family faced many challenges in seeking the best care for Jackie and their later story is one of resilience, and a struggle to navigate a complex dementia care and a funding system.
Recognising the signs of dementia
In the early stages of Jackie’s dementia, her symptoms were quite mild. She would often forget things, repeat herself, and find it hard to describe how she felt. “It was difficult to recognise the small changes, and easy for me to compensate at this point” Chris recalls. The concerns about Jackie’s memory eventually led them to a local memory assessment service.
Prior to the assessment, Jackie worried about getting things wrong and failing, which is quite common. Twelve-months later they were called in for a follow-up assessment, Chris recalls going in for the results and seeing the nurse who then advised them that the doctor wanted to speak to them about Jackie’s results.
“He just said, you have dementia. Wham that was it, no further explanation or insight into what type of dementia she had.” Chris said, leaving them both feeling lost and alone.
Coping alone
For a long time, Chris managed Jackie’s care alone. “It wasn’t a conscious decision,” he says, “it just felt natural to take on the responsibility.” Their GP referred them to social services, but the support offered—a day centre for Jackie and gym membership for Chris didn’t meet any of their needs. For anyone who has a loved one with dementia and supports them with their daily challenges, this provision is more than somewhat inadequate.
Chris became increasingly isolated, staying up late to get some personal time while Jackie went to bed early. These new routines saw their days became disjointed as Jackie would also rise earlier than Chris.
As Jackie’s dementia progressed, their separate sleeping patterns began to affect the ability for a routine that met both their needs, and the impact of coping alone began to take its toll as they both gradually became more frustrated with each other.
“I was in denial about the size and scale of the problem, and being honest, I lacked any real understanding of dementia. There are still things I don’t understand to this day.” Chris says.
Reaching out for help
As the situation worsened, Jackie began wandering, knocking on the door of a next-door neighbour, seeking help. This was the sign Chris needed to reach out to social services again for an urgent placement for Jackie.
It was at this point that he finally told their children about Jackie’s condition too. “It wasn’t until Martin spent that weekend looking after his mum to give me a break that he realised how severe her condition was. He told me, Dad, you should have raised the red flag much sooner.” Chris shares.
That weekend, Chris was just exhausted and was pretty useless, but the challenges facing Jackie, and their family were still there.
At this point, the family accepted that it was time to look for a care home for Jackie, with Martin and Sarah taking on the responsibility when Social Services came up with nothing.
The care home journey
Finding a suitable care home for Jackie was a difficult process. “I couldn’t help but feel that I’d failed Jackie. Placing Jackie in care, I felt like I was leaving her. There was also an element of finality about it. I knew it was only going to go one-way.” Chris said.
The family’s care home search led them to one close to Martin and Sarah. Having never been through the process of placing a loved one in a care facility, Chris stated that they didn’t really know what they were looking for in terms of the facility Jackie needed and the support she required. The first home they tried turned out not to be a good fit. Although the facilities were very nice, likened to those of a 5-star hotel, Jackie felt like a prisoner on the top floor with locked doors for her safety. Although Chris was able to take her out for trips under Deprivation of Liberty Safeguards (DOLs).
Whilst at this care home, Jackie celebrated her birthday, and the family had access to a little room in which to throw a party and celebrate with her. However, Jackie was unable to settle and within 30 minutes, she returned to her room. This was an indication of a further deterioration in her condition.
Falls and co-morbidities
A few weeks after her admission, Jackie had a fall landing her in hospital. She had pneumonia, a chest infection and sepsis. Jackie was very poorly and there were very real concerns for her. Fortunately, after about four weeks she recovered. Whilst she was admitted, the home advised the family that they were unable to meet her needs. It was only at this point that they were given any clarity on Jackie’s needs and advised that she required specialist dementia nursing care which was a step-up from the care she’d been receiving there.
Throughout this period the family, who were self-funding Jackie’s care, continued to pay her care fees. By now, Chris began to wonder how he would continue to fund Jackie’s ongoing care.
Searching for a care home to support Jackie’s needs
During her hospital stay, the search for a suitable care home began, again. When Jackie was ready for discharge, she was assessed and accepted by another care home in a different locality. Given the worry that was beginning to set in about continuing to fund Jackie’s care, they were grateful that they didn’t have to pay fees at the new care home for the first month.
This new home also turned out not to be a good fit for Jackie. As well as beginning to suffer difficulties with her mobility and spatial awareness, Jackie regularly clashed with some of the other residents.
In just a few short weeks, this care home also told Chris that they were unable to cope with Jackie’s needs when she had another fall (caused by involuntary jerks related to her dementia), cutting her eye and suffering bruising.
Again, the family and Jackie were faced with the question of where she went next. Another round of online research to find a suitable home began.
Having had a little bit of experience at this point, Chris began to base his research more on his senses. When viewing homes, he paid close attention to what he could see, hear, sense, smell and feel.
Moston Grange, an oasis in the dementia nursing care home desert
It wasn’t until the family discovered Moston Grange that Chris felt relief. “I was beginning to lose hope of finding a suitable home for Jackie’s needs. Dementia nursing care homes are few and far between, with suitable homes that aren’t dark, depressing and stark even rarer.” Chris recollects.
Chris describes being at the hospital with Jackie when “a ray of light” came to him in the form of Elisha Roberts, Deputy Manager of Moston Grange Nursing Care Home who’d received a referral for Jackie from a social worker. Elisha assessed Jackie and agreed that they could support Jackie’s needs and invited Chris to Moston Grange to look around.
Flexible visiting times
Chris was particularly impressed that flexible visiting allowed him to visit Jackie as often as he wanted at times that worked for him. He was also pleased by the personal care facilities available onsite. “Jackie was always very particular about her appearance and before her illness would visit the hairdressers twice a week. Having access to an onsite hairdresser returned some of the things Jackie loved to her.”
A week later, Jackie was discharged from hospital to begin her next chapter at Moston Grange. Chris followed Jackie’s ambulance with her belongings where she was admitted to one of the specialist units, Deanvale, a 16-bed mixed-gender unit for individuals in early stages of dementia. The unit focuses on maintaining independence through personalised care and support to enhance well-being and quality of life.
“When Jackie arrived at Moston Grange, I finally felt she was in the right place, Chris recalls. “I just felt relief and delight for the first time that she was going to receive the right and most appropriate care for her needs’.
“On arrival, we were met by Abdul and shown to her room. On the way there he informed us that there was a vacant room across the hall with a better view for Jackie, so we ended up moving her there instead.
Specialised dementia care
“The team at Moston Grange provided the specialised care Jackie needed. The enrichment activities at Moston Grange offered simulation and engagement as well as care.”
The family remain impressed with the warmth and professionalism of the staff. “You know they are being loved,” Chris says, expressing his gratitude for the care Jackie received. “More than that, we felt loved and supported by the whole team. They give the best hugs in the world.”
Sadly, Jackie passed away on the 1 July 2024 at the age of 77.
Reflecting more on Moston Grange, Chris has only positive experiences. “It’s a really welcoming environment, you are greeted warmly throughout the home from arrival at reception and then through onto the units. Staff, management and other residents have all become friends.
“When Jackie passed away, six members of the team attended her funeral. We weren’t the only ones to lose Jackie, they lost her too. To this day, they still tell me that they miss her.”
Given his experience, Chris feels that it is important to recognise that care teams also need looking after when someone in their care passes. “It is more than just a job to them.” he says.
Navigating funding challenges
Funding Jackie’s care became a minefield. The family passed through several local authorities, each arguing over responsibility.
The team at Moston Grange supported Chris in his application for NHS Continuing Healthcare (CHC) funding, gathering and supplying evidence to support Jackie’s need for CHC funding based on her high-risk of falls. Any fall risk without CHC funding of appropriate one-to-one 24-hour care would result in a prolonged and unnecessary stay in hospital which can be avoided with the appropriate level of funded care.
“CHC applications are complex and require a detailed assessment. For families who don’t know how to navigate the system, applying for CHC is a huge undertaking, Chris notes. “We found the many meetings about the funding of Jackie’s care frustrating. They caused us deep worry and concern, leaving us with a genuine fear of a big care bill hanging over our heads if we couldn’t resolve it.
“We were incredibly grateful to the team at Moston Grange in supporting us.”
The funding battle wasn’t over
Eventually, the funding was approved, but the battle wasn’t over—at a later reassessment, the funding for Jackie’s 1:1 support was withdrawn.
Chris was appalled by the process of reassessment. “A lady from the Local Authority spoke to Jackie to ascertain whether she benefitted from continuing funding. At this point, Jackie lacked the capacity to answer questions effectively. However, the social worker felt that this was a fair process and assessment of needs to withdraw Jackie’s 1:1 funding.
“This left her very vulnerable once more to falls, severe injury or death if she fell from her bed.” Chris said.
At this point, Elisha stepped in again to advocate for Jackie, eventually agreeing to a trial removing one-to-one support if the Local Authority agreed to fund additional equipment to support Jackie and meet her needs. Thankfully they did agree and support to prevent serious falls and injuries remained until she passed away.
Remembering Jackie
Since Jackie passed away, Chris continues to visit Moston Grange weekly, he hopes to give back by planting a tree in Jackie’s memory. “It’s important to remember and honour the journey,” Chris concludes.
1 Alzheimer’s Society Facts about Dementia
2 Alzheimer’s Society The Cost of Care