29 Jan Quietly Coping draft
My piece looks into the silent army of dementia carers in the UK. I have chosen to focus my video on a highly personal story of my Grandparents, as my Grandma cares for my 95 year old Grandad with Alzheimer’s. My aims were to give a voice to a usually concealed and not spoken about situation in society, as care is so expensive. My could imagine this piece to be used online for BBC news or the Guardian as well as charities to raise awareness, so that would be my intended audience.
Quietly Coping- The silent army of dementia carers
Gill pushes Richard through to the lounge in a wheelchair, links his arm and helps him up and rotates him into his favourite armchair. “Its looking bleak out there today, hopefully it brightens up later,” she says quietly to him as she lovingly places a rug over his knees. In fact, Richard hasn’t been outside of the apartment they share in Hampstead, north London since 2010, when he was diagnosed with Alzheimer’s. Gill Denniss is his carer. She is also my grandmother. Over the past 9 years I have seen her change from an active 83-year-old living in London she was never seen to act her age, running about town, doing yoga and every other possible activity. She was very actively involved in her group Growing Old Disgracefully and loved trips abroad, seeing most of the world really. But now she has given up most activities, constantly worries and is restricted in how long she can leave her husband.
Dementia can affect any one of us. 850,000 people in the UK have dementia with the numbers expected to soar over 1.5 million by 2040 according to the Alzheimer’s society. Two thirds of the cost of care for dementia is covered by families or the patient. The army of family carers are saving the economy a staggering £60 billion a year, according to a study done by the ONS. The carers trust says there are 670,000 unpaid dementia carers in the UK, these silenced heroes’ often get shut away and diminish themselves from society.
“I can now only leave grandad for a maximum of 2 hours, its’ so restricting and I find little time to do things for myself, it’s a constant worry.” It’s not just restrictive for my grandmother but as a whole family, Sally Denniss (my mum) says it is very noticeable and means “She can’t just pop down and visit us in Hampshire anymore. The time constraints mean she even things like seeing her other five grandchildren is a struggle and she doesn’t see them as often as she would hope! She was an avid lover of travelling too, always jetting off to see the world and visit friends in other countries, but now she definitely cannot.” Although my Grandmother receives help from a brilliant team of carers in Hampstead, she is reluctant to ask for help from anyone else, everyone offers however she simply says “I don’t want to trouble them, they all have their own lives and are busy enough. I don’t want to seem dependant.” Richards carers come 3 times a day 7 days a week 365 days a year, but this doesn’t stop any of the worry or fears my Grandmother has. She likes to be present when they come, to check that they actually will come. Even with this help she still does have to do all the washing, cleaning, organisation of finances, house maintenance and manage her own deteriorating health as well. “It’s not just all the normal household tasks I have to face, there are common spells of boredom, isolation and jealousy towards my friends having unbounded lives.”
According to the Alzheimer’s society personal centred care is vital for someone with dementia, regular carers are crucial and a set routine in a place that is comfortable for the patient Hospitals and general care homes are not sufficient as the rotation of staff, long waiting times and unfamiliar surroundings means that the dementia patient is seeing many faces, getting confused and getting frustrated. The confusing state of entitlements for a patient that needs care can either see the NHS taking control or the local authority. If the NHS is in control then healthcare is free, so if the primary need of the patient is a health care need they will be under the responsibility of the NHS and they will provide all healthcare and social care. However, if the care needed is more social and personal (like many cases in dementia) it’s down to the local authority and the patient themselves will have to fund the care sometimes with or without the support of social services.
Financial support is vital for patients and their families as the cost of home care is £44,512 a year, with the prices varying on different locations around the country, London being the most expensive, according to payingforcare.org. Anne Wilding works for Age UK and is a family advisor specifying in dementia she said “The umbrella term of care in the UK comes at an enormous cost, we can see the averages across the UK of care, it ranges from the lowest of £519 a week in the north of England for the most basic care needs to £1,052 a week for the same care in the south east. It’s a postcode lottery really. Local authorities may pay for part or all of the costs of care, subject to tight constraints around who qualifies. Before picking up the bill, a council will means-test a resident, assessing the value of their home, pensions as well as savings and investments. If this comes to more than £23,250, then the individual is responsible for all of their care costs.” When asked why the care system is so costly, confusing and corrupt Anne’s short answer was “Cash strapped and underfunded councils try to help but cannot face the full amount as there is no end. So it’s down to government funding, there simply isn’t enough.” Since 2010 social care spending in England has been shrunk by £7 billion. In research conducted by the Association of Directors of Adult Social Services (ADASS) in 2017 they found that councils were planning to push social care cuts of £700 million in 2018-2019, equating to nearly 5% of the total £14.5 billion budget for social care in England.
The two main financial supports that are readily available for both patient and carer are: the attendance allowance, a weekly sum that if the person has dementia themselves and is over 65 qualifies for one of the allowances. The first is £55.65 weekly, if you need care day or night. It then rises to £83.10 if the care and support is needed both day and night. It should also be said that if you are receiving the attendance allowance at the middle or higher rate, then you should be exempt from paying council tax. However, looking at the form it’s no wonder many people are unaware as it is a confusing and lengthy process! The sum of money that is received both on the medium and higher attendance allowance clearly does not cover the cost of care needs of a dementia patient. This is where its seen that assets are eaten into and families are covering the costs.
Karen Roach, a care support worker from Home Instead care said “People with dementia do generally and typically need more intense and specific care making it costlier. The premium rate of care that they need usually costs around 40% more than basic care needs. It is totally unfair that users of this service get the same amount of funding from the local authority when it’s not their own fault.” It is said that people with dementia usually spend around £100k on the care they need in an average lifetime according to magazine Money Marketing. “It is not fair or sustainable that carers continue to foot this bill, with an ageing population, the number of people with dementia is set to grow, so too will the costs.”
Karen tells me the story of one of her 93-year-old patients who really hit rock bottom last year and has since passed. Her name has been changed to Daisy, she has suffered with dementia for 12 years. She was bedridden, unaware of her surroundings, struggles to communicate and receives round-the-clock care. She had a few of her distant family supporting her. Daisy’s family decided to sell her one-bedroom flat for £176,000 five years ago to pay for care home fees that have so far amounted to £198,000. She then had nothing, all of her assets gone, possessions and her whole life stripped. Social services stepped in as much as they could and gave reasonable help and support, but it does depend on location as to how much the local authority would step in. Karen says this is an all too familiar tale and isn’t unusual.
I am attendeding Templeton Cafe on February 22nd, they are a cafe set up by the Alzheimer’s Society for people suffering with dementia, carers and professionals. I am unable to film but they are happy for me to chat to people their to get interviews and hopefully some case studies.
Overall, the state of care as a whole in the UK is costly and confusing. Dementia care is a premium care. While our ageing population grows and demand for social care rises, successive governments have been making cuts left, right and centre which has accounted for £6 billion being cut in the past 8 years. This is leaving dementia patients to pick up the bill, with families propping up the broken system. These cuts are a false economy, piling pressure on our already over-stretched NHS, as people with dementia put off asking for help until crisis point, because they know the cost it carries. People with dementia deserve better and they have already waited too long. Without the support network of families and carers working tirelessly around the clock, I don’t know where a lot of people would be.
References:
https://www.alzheimers.org.uk/about-us/news-and-media/facts-media
https://carers.org/key-facts-about-carers-and-people-they-care
https://www.alzheimers.org.uk/about-dementia/treatments/person-centred-care
Below is my storyboard, I need to get a few more shots to smooth out my video piece and add the voice over, the script is below
Storyboard QC
Voiceover Script:
Like 700,000 other people in the UK Gill Denniss cares for a loved one with dementia. Her husband Richard or Dick is 95 and was diagnosed with Alzheimer’s. They are both my Grandparents. These silent hero’s hide away from society, not out of choice but because of the expensive and worrying cost of care in the UK. They are quietly coping
My grandma is 83 and deals with all the struggles of everyday life. It drains her and strains her, with it getting harder every year
The awful disease of Alzheimer’s affects the whole family, its distressing to see a loved one change so much
As mentioned, books were the love of my Grandads life and he always had at least one on the go
Whilst filming my Grandma made the decision to start using the wheelchair instead of my Grandad walking using a frame. He was too wobbly on his feet and it’s a lot safer when my Grandma is moving him around
My grandma has the best support network of friends, who know the situation and are always on hand whenever she needs them
Luckily for my Grandma she has a garden, this is a way of her being able to escape the confinements of her flat in Hampstead, breathe and just escape from her restrictive life
