Dementia Awareness Week: Breaking down barriers

by Scott Sinclair
Policy & Public Affairs Manager, England

Scott Sinclair, Policy and Public Affairs Manager

What do you think about when Marie Curie talks about care and support for people with a terminal illness? Do you class dementia as a terminal illness? If not then you’re not alone.

During Dementia Awareness Week (17-23 May) we want to help spread the word that dementia isn’t an inevitable part of growing old. It is a terminal illness and those living with it, and their families, need as much care and support as people with terminal cancer or any other condition.

We want these people to know that Marie Curie is here for them.

A recent Marie Curie report, Living and dying with dementia: Barriers to care, looked at the barriers people with dementia face when accessing the care they need. It found that dementia is routinely not being identified as a terminal illness, often resulting in people with dementia, who need care and pain relief at the end of life, missing out.

With an ageing population, the number of people forecast to be living with dementia in the UK is set to rise to two million by 2051. Through our research, community and hospice care, we hope to reach more people affected by dementia, people like Sara Phelps who struggled to get the care she needed for her nan.

Sara's story

(back from left) Sara Phelps, her mother Anne and daughter Siobhan; (seated) Joan, Sara's nan
(back from left) Sara Phelps, her mother Anne and daughter Siobhan; (front) Joan, Sara's nan

Sara battled to get her nan Joan the help she needed at the end of her life. Things didn’t improve until Joan’s final days, when Marie Curie Nurses stepped in.

"When my nan was diagnosed with vascular dementia, I knew she wouldn’t want to be in a home. I am the only child of an only child so there was only me. In August 2014, I moved from Surrey to Yorkshire to look after her leaving behind my husband and kids.

"When I first moved in, I contacted social services but was told Nan wasn’t entitled to any care. So as a family, we decided to pay for a private carer. But while the carers tended to be nice they were not experts in dementia care. It felt like I was battling for everything and going round and round in circles."

Lack of help

"When Nan had a fall, the carer refused to lift her due to health and safety regulations. I called my mum over and together we managed to lift her up, but we both hurt our backs doing it.

"It was only when Nan was admitted to Castle Hill Hospital, in Hull, with a kidney infection that a social worker told me that she was actually entitled to some financial support. But I should have got it a lot sooner and it would have been really helpful."

Pain relief

"Nan came out of hospital with a discharge care package. She deteriorated quite quickly and the GP advised that she needed end of life care. He made the referrals to the District Nurse and I asked him to make a referral for a Marie Curie Nurse too. It all happened in 12 hours which was really good. A hospital bed was brought around and they got the dose of pain relief right and made sure she wasn’t in any pain.

"I have no complaints about my nan’s care at the end as she was treated like an individual. But there were times before that it felt like she was a social embarrassment and I struggled to get her the care she needed."

Sara’s experiences of caring for her grandmother Joan are shared by far too many people. At Marie Curie, we hope that during Dementia Awareness Week and beyond, people like Sara will know we are here to help so they get the right care and support at the right time. Keep an eye on our social media pages this week to learn more about our research into dementia.