'Urgent action' needed on dementia care in Wales as 70,000 could live with condition by 2040

Anticipating the next phone call, losing the loved one you once knew and dreading the day they could forget who you are.

That's the reality for family members whose loved ones live with dementia.

Gloria Cavanagh, 79, is one of at least 42,000 people in Wales living with the condition. Her daughter Natalie shared her experience of the "cruel" disease on ITV Wales' Sharp End programme.

"My fear is that one day I'm going to go and see her - and she's not going to know who I am," she said.

Gloria was always up for a laugh and a "party animal" in her younger years, regularly socialising and enjoying herself with friends and family.

Natalie said: "It's sad because I never expected my mum to be like this. She hasn't been right for about nine years, but the last three were the worst because she kept coming to my place of work saying 'I've lost this, I've lost that.'

"She was down the bank every day because she'd lost her cards. She was always asking people to help her do things, but she just went down and down. Then when she was on medication, she took too much and ended up in hospital because she'd forgot that she'd taken it. And then we just went on a downhill slope from that."

A person with dementia might have problems with:

• day-to-day memory – for example, difficulty recalling events that happened recently

• concentrating, planning or organising – for example, difficulties making decisions, solving problems or carrying out a sequence of tasks (such as cooking a meal)

• language – for example, difficulties following a conversation or finding the right word for something;

• visuospatial skills – for example, problems judging distances (such as on stairs) and seeing objects in three dimensions;

• orientation – for example, losing track of the day or date, or becoming confused about where they are.

• A person with dementia will also experience changes in their mood. For example, they may become frustrated or irritable, apathetic or withdrawn, anxious, easily upset or unusually sad. With some types of dementia, the person may see things that are not really there (visual hallucinations) or strongly believe things that are not true (delusions).

Gloria's admission led to her diagnosis of dementia and after the hospital stay she was placed in sheltered accommodation.

"It was tough as a family," Natalie says. "All she did in there was stay in bed all day - from the time she woke up in the morning, until the time the carers left after giving her medication.

"Every day I was going up there to check she was okay, but even carers would go in and say 'Come on, Glo, get out of bed. Come and have a shower' but she'd say 'no thank you'. She didn't wash or anything. And that's not her at all - she was the cleanest person on the planet.

"I remember when I was a kid, she'd be out the front door scrubbing the step like everybody else used to do."

Natalie is not alone - the need for unpaid care, often provided by loved ones or friends, will grow significantly by 2040 with 43% more people expected to require unpaid care. It's estimated that nearly 70,000 people in Wales will be living with dementia by 2040.

Thankfully, Gloria received respite care at a council-run home locally in Penarth while Natalie needed to take time away. "She went in on respite, because I knew she was struggling, but I had a phone call saying, 'she doesn't want to go home'.

"I thought 'yes!' It’s company for her, she loved it. There's somebody there if she needs them - because she was just left to their own devices in a little flat. In this home she's got all her friends.

"But she has to pay for everything she gets. It’s very tough, so she sold her house to pay for what she's getting now."

The cost of dementia care in Wales has now reached £2 billion per year. This figure is set to rise to more than £4.5 billion by 2040 unless urgent action is taken, according to the Alzheimer's Society.

And there's high demand for places in care homes, which face many of their own challenges.

Clare O’Toole is the manager at Ty Dewi Sant Residential Home, where Gloria is now a permanent resident. She says there are always more residents on a waiting list to get in.

She said: "I've been here in this particular home for nine years. And since I've been here, we've actually introduced our own dementia unit because demand was so high."

Despite this high demand, recruiting care staff is difficult: "We constantly have vacancies. That's not just in our home, that's in our sister homes as well.

"(Carers) get the real living wage, but it's still the same price that they would get, for example, in Tescos - and it's a far harder job and a lot of responsibility that goes into caring for an individual.

"It needs to be promoted - how enjoyable it is to actually work in care, because I do not think that Joe Bloggs in the street understands how much joy you can get out of this job.

"It's not all negative, it's very enjoyable. When you leave here at the end of the day, you feel like you've made a difference to somebody's life and that is invaluable.

Clare hopes the Welsh Government will prioritise recruitment of carers. She added: "I feel appreciated from within our care home sector, within the council I feel very appreciated - but as far as outside of that, I would say not really."

Does a care home manager like Clare worry about the future? "I do because I don't feel that enough is being done in regards to having the facilities for our ageing generation," she says.

"Dementia intake has gone up high and there's not the placement for them. When they're at home they've got their relative caring for them and it's a 24 hour, seven days a week job that comes with a lot of stress.

"By the time they come to us, they just haven't got any more to give. And it's affecting that person's health as well, which also has effects on our NHS and our health service. So they need to really be creating a lot more homes to be able to meet capacity."

Cllr Lis Burnett, Leader of the Vale of Glamorgan Council, said: “The incredible challenges councils face in funding public services are now very well documented. One of the biggest pressures on our budget is the ageing population of the Vale and the growing number of adults needing social care. We are also seeing a steady increase in the complexity of the care they need. Around thirty one per-cent of all Council spending this year will be on delivering social care. This will be around £96m.

“Everyone deserves to grow old with dignity and everyone working in social care wants to provide the best possible support to those who need us. The tireless work of our teams, who operate with ever-tightening budgets, shows just what committed public servants they are.

“The current situation, however, is just not sustainable. Our Council is prioritising funding services such as social care and additional learning needs provision in education. We are putting first the needs of those who need us the most. To continue to be able to do this we are rapidly having to change the way in which we deliver other services that are provided to all residents.”

A Welsh Government spokesperson said: “Our Dementia Action Plan sets out our vision for Wales to be a dementia-friendly nation that recognises the rights of people with dementia to feel valued and to live as independently as possible.

“With dementia rates set to rise, we will consider the impact on communities as we develop the next steps for our Dementia Action Plan.”

• You can see more in-depth coverage of this subject - plus all the latest political discussion - on Sharp End, Monday, September 23, at 10.45pm on ITV1. Catch up with the latest episodes here.

• Alzheimer’s Society Cymru is here for everyone affected by dementia. Call their Support Line on 0333 150 3456, if you speak Welsh call the Welsh-speaking support line on 03300 947 400, or visit alzheimers.org.uk