Dementia Action Week 2021

The Real Cost of Dementia

One in three of us born in the UK today will go on to develop dementia, and there will be one million people living with the condition by 2025, making dementia care one of the greatest challenges facing our society. Sarah Coleman, an Alzheimer’s Society Dementia Connect Services Manager based in Brighton, writes about her work locally and why she wants us all to call on the government to #CureTheCareSystem this Dementia Action Week (17- 23 May 2021).

Dementia is a complex condition, and the impact of symptoms can make it increasingly difficult to carry out the everyday tasks most of us take for granted. Some people with dementia require one-to-one support with nearly every aspect of life, either at home with a homecare worker or in a care home. This is classed as social care, and as a result is means tested, rather than provided free on the NHS. We at Alzheimer’s Society believe people with dementia should have the same right to care as people with other conditions, without excessive, unfair costs.

Typical dementia care costs around £100,000, although this can be as much as £500,000. Delivering care for people affected by dementia is on average 15% more costly than standard social care and can cost up to 40% more than for people without dementia. Moreover, people with dementia and carers are paying for services that often do not deliver good quality care.

Coronavirus has exposed the fact that people affected by dementia have been failed by a social care system that is inadequate, hard to access, costly and unfair. People with dementia have been worst hit by the pandemic, accounting for a quarter of all coronavirus deaths in the UK. There are 29,400 people living with dementia in Sussex and 850,000 people across the UK.

Throughout the pandemic, despite the many challenges, we have kept our local services open by taking them online. Our popular Carers Support Groups offer a lifeline to carers and are still being delivered virtually, as are our Carers Information Support Programme (CrISP) courses. Our Dementia Advisers and Dementia Support Workers across Sussex have made almost 4,000 welfare calls and referred people on for companion calls, for additional support during lockdown. Over 100 volunteers have made more than 1,000 companion calls.

Alzheimer's Society Dementia Connect Helpline
Alzheimer’s Society Dementia Connect Helpline

Our Memory Assessment Service has remained open in Brighton and Hove and we have led on an initiative with Brighton and Hove buses, whereby all buses now have dementia friendly flooring and nearly 100 percent of the staff are now Dementia Friends.

During Dementia Action Week, Alzheimer’s Society is pleased to be launching Dementia Connect in Brighton and Hove, commissioned by the NHS Clinical Commissioning Group. Dementia Connect offers personalised support, by phone, online, and, once it is safe to do so, face-to-face. The service, which operates at a local and national level, connects people with support and groups in their community, offers advice on how to cope with dementia and how to navigate social services, legal documents, and Lasting Power of Attorney.

In 2019, I worked on ‘Bring Dementia Out’ – Alzheimer’s Society’s collaboration with Switchboard in Brighton to develop dementia resources specifically for the LGBTQ+ community. This Dementia Action Week we are taking part in the online event ‘Dementia and the LGBTQ+ Community – A Discussion’ again in collaboration with Switchboard, who run the Rainbow Café.

I asked Switchboard’s John Hammond how he supports LGBTQ+ communities affected by dementia or memory difficulties, and their caregivers. “We provide telephone and online support and have a programme of social events, all of which provide safe and affirming spaces for LGBTQ+ people who often do not feel that general dementia services are representative or welcoming of their needs.”

He went on to say, “LGBTQ+ people affected by dementia can experience stigma and discrimination in multiple, complex, and intersecting ways because of characteristics such as age, orientation, gender identity, physical, mental, and cognitive ability, ethnicity, socio-economic status, and more. As a result, many can feel marginalised in society and are looking for support services that are free of judgement and criticism and that truly embrace a person-centred ethos.”

John also supports our call to ‘cure the care system’, having seen the impact of the inadequate social care system. “We at Rainbow Café hear stories from individuals and caregivers who have experienced significant financial hardships, as a result of having to pay for the necessary levels and types of care required to support someone with dementia, especially as their condition progresses and can require full-time residential nursing care.

“Stories of lifetime savings having to be used to pay for nursing care are harrowing and especially so when that care may not even fully support the best individualised quality of life for LGBTQ+ people. For people living with dementia and requiring residential care, an advocate is essential. Sometimes, LGBTQ+ people don’t have a birth family network and the importance of a ‘family of choice’ and advance care planning comes to the fore.”

For young carers this has also been a worrying time, with the last year’s visiting restrictions causing untold heartache. Orla Phipps who lives in Eastbourne became an internet sensation while caring for her grandmother, Agnes. While her films are extremely touching and often amusing, the reason she gave up her education to care for Agnes is much more serious, as she explains. “Coronavirus has affected my life and the life of my family immensely – the worry about what could happen to my grandma if we had risked having multiple carers looking after her. This is what led me to become a full-time carer for her myself.

OrlaPhipps and Grandma Agnes
OrlaPhipps and Grandma Agnes

“Just before Covid hit, my grandma Agnes was in a care home recovering from a hip replacement, and we are very lucky that she was able to come home just before the nursing homes closed their doors to visitors. Had she not been able to have visits from my family, her dementia would have progressed much faster and her cognitive function would not be as good as it is today.

“I have received many comments from people who follow us on TikTok who have lost loved ones to Covid, many of whom had dementia and were in care homes. It breaks my heart to think of those who have died without their loved ones by their side.

“We must do better, and support those with dementia and their families, now more than ever. People with dementia need human connection, music, art, and love. These are the things that they need. Moving forward we must make up for lost time and show them the care and dignity that they so greatly deserve.”

Alzheimer’s Society is focussing on the wider impact of dementia on carers and families this Dementia Action Week, with a hard-hitting visual campaign that really brings to the fore the need to #curethecaresystem and end the stigma and discrimination faced by people living with dementia and those that love them. This Dementia Action Week you can contribute to change by signing our petition, downloading our resources, and getting involved.

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