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Dementia Care And ... " Sandwich " Family Carers ? - Carers UK Forum

Dementia Care And ... " Sandwich " Family Carers ?

For issues specific to caring for someone with dementia.
A new buzz word ... SANDWICH carers ... read on :

https://www.express.co.uk/life-style/he ... lp-charity

Dementia : Are YOU one of the UK’s 2.4 MILLION sandwich carers juggling career and caring ?

DEMENTIA and Alzheimer’s disease affects 850,000 people in the UK.

Roughly 2.4 million Britons are trying to balance caring for a loved one with the condition whilst also caring for a child - which is now known as being a ‘sandwich carer’.

The number of people living with dementia is set to soar to 1 million in the UK by 2025.

With just six years until that poignant number is expected to be reached, dementia care should be at the forefront of the UK government’s health plans.

It’s estimated that one in three people will care for a person with dementia in their lifetime.

And millions of those will be sandwich carers.

The term sandwich carer refers to people who have the dual responsibility of caring for a child as well as an older family member or friend with a physical or mental condition.

Express.co.uk spoke to Paul Edwards, Director of Clinical Services at Dementia UK, about this new generation of carers and what can be done to help them.

“There are around 2.4 million sandwich carers in the UK,” Mr Edwards explained.

“With the population living longer, there are more people having children much later than before as well as more diagnoses of life-changing conditions like dementia in the family.”

Isolation of sandwich carers

A recent report from Carers UK revealed sandwich carers are often saddled with intense pressure and feel unable to talk about it.

Mr Edwards said: “These pressures can have a direct impact on a sandwich carer’s health as well as their relationships with other family members.

“With most people over the age of 45 having a caring responsibility, we need to wake up to the fact that there should be more in place to better support this silent generation of carers.

“It’s about encouraging carers as well as other groups, such as employers, to recognise and speak openly about the challenges they face. Carers often talk about how alone they feel, but just by having someone who can listen to their concerns can assuage this.”

He went on to explain that Dementia UK’s Admiral Nurse Dementia Helpline takes “many calls” from carers in distress.

Thanks to the unique dementia expertise and experience offered on the phone, Admiral Nurses can get to the heart of a carer’s challenges.

“This allows them to see the importance of making time for themselves and signposting them to various sources of respite care,” he added.

How can employers help sandwich carers?

Mr Edwards told Express.co.uk the UK has a “huge workforce challenge” on our hands as the stresses of being a sandwich carer can encroach into professional lives.

He explained: “Employers have a vital role to play in ensuring that their staff have the proper support to manage their work and caring responsibilities.

“Across sectors, we should be training workforces in understanding dementia. This is the absolute bedrock, but we should be going further than this.

“The necessary employment procedures and policies should be put in place for employee health and wellbeing, whether that’s flexible working hours or a carers policy which recognises the stresses that sandwich caring can cause and makes a difference to the employer-employee relationship.”

What is Dementia UK doing to help sandwich carers?

Dementia UK has done “a lot of work” in building up awareness of dementia in the corporate and working world, Mr Edwards said.

“We host a number of clinics which open up employers to the challenges that dementia can bring and how this can directly impact on employees’ working and personal lives.

“Similarly we also allow employees to benefit from the one-to-one emotional and practical support of an Admiral Nurse.

“Employees shouldn’t be bottling up what they’re feeling or that they have to put on a pretence that they’re managing.”

What’s being done about dementia in 2018 ?

In February 2015 Prime Minister David Cameron launched his Challenge on Dementia 2020, which laid two key points for NHS England.

The first: to make sure the UK is the best country in the world for dementia care and support for individuals with dementia, their carers and families to live.

The second: to ensure the UK is the best place in the world to undertake research into dementia and other neurodegenerative diseases.

Since then plenty has changed - the UK has a new Prime Minister and the government are focussing on the EU referendum vote.

But is dementia care still at the forefront of the government’s plans?

Jeremy Hughes, Chief Executive of the Alzheimer’s Society, wrote to PM Theresa May back in winter 2016 with this in mind.

He received a response saying dementia would continue to have a high priority on Mrs May’s agenda.

And in March, the government announced a £40 million investment in the UK Dementia Research Institute.

The DRI now has a total budget of £290m: £190m from the Medical Research Council, £50m from Alzheimer’s Society and £50m from Alzheimer’s Research UK.

It’s reported the new funding from the Department for Business, Energy and Industrial Strategy will help build a new DRI Hub at University College London, which is due to open in 2023.

Will it be enough to plug the gap in the system and help the millions of sandwich carers across the UK ?

Only time will tell.

If anyone still wants a piece of the action , my bet still stands.

https://www.carersuk.org/forum/support- ... ring-34158

More family carers will leave the workplace than join ... by the end of next year.

The support for family carers is NOT there and , what support that is available , simply unaffordable.

Perhaps a " Parent " support scheme , similar to the childcare support scheme ... to enable family carers to stay in the workplace ???

Why favour working mothers , and then discriminate against " Sibling " workers ???

There again , isn't " Caring " work just as in careworker ???

So much for Government policy ... supported by our own supporting organisations.
I do wish a council somewhere would try the experiment of 'hiring' family members as carers of their own families.

In other words, if, say, a council were prepared to spend the SAME amount of money paying a FAMILY member to care for an elderly parent/ill spouse/disabled child etc, as the council ALREADY has to pay for a professional carer, whether that could serve to test out whether more family carers could, and would, be prepared to be FULL TIME family carers.

The question is, is the extremely low 'wage' of Carers Allowance (which no on could live on if that was their weekly salary!) inhibiting family members from becoming 'full time' carers.
Trouble is ... Employment law !

Family carers becoming workers ... financial Armageddon within weeks !

The only way would be for the " Carer " tag to be lost ... becoming workers , with all that goes with it.

A Carers Charter ... defining precisely what a family carer is , coupled with a new place in law ( Bypassing the Employment laws ? ) would be a step needed to be taken BEFORE any notion of family carers stepping into the void could be a reality.

Not forgetting Direct Payments.

be used by the caree to pay a family member to care ... same reason , Employment law :

https://www.carersuk.org/forum/support- ... 20payments

Attendance Allowance / PIP ?

Grey area ... awaiting response from the DWP on this one :

https://www.carersuk.org/forum/support- ... 0allowance
The Care Act clearly states that family members CAN be paid for looking after their loved ones, via Direct Payments.
In my case, I know this very well, but the LA care plan doesn't make any provision for this. This is one of the key issues I'm wanting the Ombudsman to address. M wants to come home to me to get some decent food and play with his garden tractor and our steam engines. As well as the big ones we have smaller ones too!
I have argued that since there is no room in M's garden for them, these are "exceptional circumstances", but they just ignore anything the don't like. At least if they said "No, because..." I could then have a proper discussion.
BB sounds like they won't actually say " no" and give a valid reason, because there isn't one!!
The provisions of the Care Act clash with the use of Direct Payments as explored in the DP thread.

In essence , only in " EXCEPTIONAL CIRCUMSTANCES " can a family carer be " Employed " by their caree ... which , if granted , contravenes Employment law. There is NO gateway , just a clash between the two laws.

From the DP thread :

When the regulations on direct payments in the NHS were issued in 2013, there were, at first, no rules about close relatives doing the work at all, and being paid out of the budget, but this was by mistake.

The regulations were then amended in the same year to say that a health body may only permit an individual living in the same household as the patient, a family member or friend being paid out of the budget, if this was necessary. However, this was interpreted by some clinical commissioning groups as placing a restriction on paying family members or friends who were not living in the same household as the patient, contrary to the government’s intention.

So the regulations were amended again in 2017 to ban paying a connected person to meet the needs, unless it was necessary. However, a presumptively banned connected person is defined only as one who is living in the same household, meaning that if a person is not living in the same household, it does not matter that they are close relatives, or even spouses.

The guidance on direct payments in healthcare, dated 2014, reflects the position prior to the 2017 amendment to the regulations and implies that living in the same household is not the determinative key part of the test for the prohibition (see paragraph 153 of the guidance). But the explanatory memorandum to the 2017 amendment strongly suggests that the 2014 guidance requires urgent amendment as well.

One reason I started that DP thread ( And extended to both Attendance Allowance and PIP ) ... too many grey areas ... and , as recommended , one for Carers UK to explore on everyone's behalf.

In addition , how many family carers and their caree are in breach out there ?

So far , and not unexpectedly , silence ... nobody within Carers UK tends to read the threads on this forum !

Why does it need a contributor to the forum to spot inconsistencies like this one ?
Maybe one of the Mods can flag this up with CUK.

I do NOT live with my son, he lives 14 miles away in his own flat, but understandably wants to come home to play with the steam engines etc. So whatever criteria is used, I should be paid!
Yep , one for Carers UK alright ... together with AA / PIP issue which is DIRECTLY related.

DPs ... the employment issue problem was first flagged up by Carerwatch over a DECADE ago as related on the DP thread :

https://www.carersuk.org/forum/support- ... care-30902

https://www.carersuk.org/forum/support- ... arer-33078

CAB's view ... also posted on the main DP thread :
The local authority (LA) will not usually allow you to use direct payments to pay for services from your husband, wife or partner or from family members living with you. This means the following people:

parent or parent-in-law
son, daughter, son-in-law or daughter-in-law - except for children's services
stepson or stepdaughter
brother or sister
aunt or uncle
the husband, wife or partner of any of the relatives in this list
a person who lives with any of the relatives in this list as if they were that relative's spouse or civil partner.

The LA may allow payment to someone in the list above if it is satisfied that it is necessary to meet your needs, or, if the person needing care is a child and it is necessary to promote the child’s welfare.

If they do allow a family member , that carer WILL BE EMPLOYED by the caree !

So far , no court case to decide one way or the other.

My fear ?

Said future court case ... Regina v. A Caree / A Family Carer.

The LAs don't assist ... how many are either ignorant of the law or , turn a blind eye ?
One of the ombusdsman decisions I posted earlier this week was on this subject.
From memory it was mum of a special needs adult whose respite holiday and day centre was closed.
The ombudsmen recommend that in these exceptional circumstances Mum was paid temporarily until council reinstated other option, so until crow files then.

I must admit I wasn't sure how paying mum meant she'd get any respite ever, but at least she could afford to eat
Yep ... another clash in the law ... albeit on a temporary basis.

Does not address the employment issue , merely side steps it as if it didn't exist.

If the mother is receiving DPs , under employment law , she is a paid worker ...just like anyone else in employment.


As such , I trust she is receiving at least the minimum wage , and downing tools after the 48 hour working directive is reached every week ... for starters ?

Workplace place pension rights ?

All employers need to make provision for their workers ... without exception.

If not , someone ... either LA or the caree ... is in direct breach of employment law !

Not a conundrum , this really a major problem in the law ... conflicting to say the very least.

Yet another case ... how many more out there ?


We can only deduce and reason from what's out there ... none of us are social care experts !