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Carers are "experts by experience" out of necessity not choice!

By Sarah Merriman

tide Head of Campaigning and Influencing

The phrase ‘Experts by Experience ‘ is one that is often used when referring to unpaid family carers of people living with dementia . The rationale behind this, being that whilst Health Professionals are viewed as experts in their medical field – Psychiatrists, Neurologists, Psychologists for example , it is family and friends that are experts in their loved one. They know the Life story of their loved one, their complex relationships, what makes them tick. It is they, who know favourite foods, smells, colours and musical preferences, they who know whether the morning preference is a cup of tea and toast or a full English washed down with lashings of coffee. They know all the little nuances , how many pillows they like to sleep with , whether they love the outdoors or loathe it – in short, all the aspects of a person that makes them unique.

In my role, working for a charity that champions and values unpaid family carers of people with dementia , I facilitate a monthly peer support group for carers of people with Young Onset Dementia ( that is a diagnosis of dementia under the age of 65 ). At the last meeting , as I listened to the conversation topics, it struck me that possibly more so than any other group , these carers had become Experts by Experience through necessity not choice and not just in their loved one’s preferences but in medical and legal matters as well. The conversation moved from a discussion around medications and their side effects and suggestions as to different medications , less likely to be aggression causing, right through to Power of Attorney, capacity and safeguarding issues at a local care home .

One member discussed the fact that her husband had been arbitrarily banned from the local gym by the manager, for displaying behaviour deemed as inappropriate. This was without any recourse to discussion or working on a solution to the issue , and probably more disheartening,as the establishment in question were aware of the individual’s dementia diagnosis. When approached after the event the manager responded with the comment ‘ I didn’t even know younger people could get dementia !’

This lack of awareness of the condition and lack of standardised support makes me sad and angry simultaneously . If you are unfortunate enough to receive a diagnosis of Cancer , you may well choose to google a prognosis or treatments to glean more information , but it is by no means a necessity to do so. You will have discussions with Consultants , with Cancer Nurse specialists – you will be offered Counselling , signposted to support groups and organisations and have a treatment plan put in place .

In short , there is a safety net .

In contrast , when people are given a diagnosis of dementia and particularly a diagnosis of Young Onset Dementia , where is the safety net ?

The vast majority of people are given the diagnosis , discharged and referred back to their GP for 6 monthly or yearly check ups ( if they are lucky ) and ‘That’s all folks !’

I am not entirely sure whether the rationale behind this , is that there is no cure or treatment , therefore clinicians have fulfilled their role in providing the diagnosis and from a clinical/medical perspective there is little more to be done .

This is where I would argue that the system falls down .

You cannot impart the news that someone, has not only a life limiting condition ( let’s not forget that dementia is a terminal diagnosis ) , but perhaps more importantly a life altering diagnosis and wave them off to their GP with a perfunctory ‘ I am discharging you back to your GP ‘ and leave it at that. The phrase ‘ I felt like we had dropped off the edge of the cliff ‘ following a dementia diagnosis is one I have heard endlessly over the years from people with dementia and their families .

So my question is this –

‘ Where is the safety net ?’

‘Why is there nothing in place to catch these families ?’

Many talk about feeling lost and abandoned , not knowing which way to turn following on from a diagnosis of dementia .

These are not phrases I commonly hear when people have been diagnosed with other life limiting conditions .

Dementia is growing exponentially. There are currently around 900,000 people with dementia living in the UK . Approximately 70,000 of those have Young Onset Dementia. These figures are conservative at best , diagnosis rates in some areas are less than 60 % and rarely reach 70% and given the fact that it can take on average 4 years to obtain a diagnosis of Young Onset Dementia , there are potentially thousands more people out there living with the condition , undiagnosed.

It appears to be the nettle that no one is prepared to grasp . Successive governments have paid lip service to the idea of creating a Britain that will be the best place in the world for people living with dementia .

That is simply not the case – not in my experience or that of the many family carers I speak to . My journey as a carer started 18 years ago and ended 11 years ago when my nana died and yet I still hear of the same struggles from carers today , that I encountered all those years ago.

A fact that is often overlooked is that a diagnosis of dementia is a diagnosis for the whole family . Again , especially pertinent in the case of a Young Onset Dementia diagnosis. Many people give up work following a diagnosis and partners also give up work to care for them . Mortgages are still often left to be paid, there can be children still living at home ; the financial burden is huge . The mental health of those with a diagnosis and those caring for them can be severely impacted , not least because of a lack of support and services and age appropriate respite .

We are still waiting for an update from the government on the delivery of the ten year plan for dementia .

In the meantime , waiting times for memory service appointments are lengthy.

Post diagnostic support is patchy at best .

As for access to dementia trained domiciliary care staff to enable your loved one to receive appropriate care at home – well, you can but dream ! Those staff are paid minimum wage, and generally have minimal training so are in no way equipped to deal with the complexities of a dementia diagnosis, particularly in cases of distressed behaviours .

Many hospitals are short staffed and/or have a lack of staff adequately dementia trained to enable them to provide meaningful support or address the specific needs of the patient with a dementia diagnosis and so I hear awful stories of experiences that fall far short of what any of us would want for our loved ones .

There are thousands of unpaid family carers of people with Young Onset Dementia , living lives of quiet desperation behind closed doors. They are propping up a crumbling Health and Social Care system . If they are lucky they are entitled to ….. wait for it ….. the grand sum of £67.30 a week carers allowance, but only if they have jumped through various hoops to get it . That wouldn’t even fill a family car with a full tank of petrol !

It is quite frankly an insult.

I don’t have all the answers … far from it … however what would be a great start would be :

  1. Standardised Dementia pathways across the country for Young Onset Dementia.
  2. Ongoing Post diagnostic support ( from diagnosis to death ) and counselling offered as standard to the whole family.
  3. Dementia trained and appropriately paid domiciliary care staff to provide care at home for as long as required .
  4. Carers allowance to be a living wage .
  5. Age appropriate respite care to be available as well as long term care placements .
  6. Mandatory dementia awareness training to be given to all staff in public sector organisations ( including information on Young Onset Dementia )
  7. Dementia to be viewed as a Health Condition rather than a Social one – thereby increasing access to Continuing Health Care funding.
  8. Legislation to be passed to allow Carers of people with a dementia diagnosis , the right to flexible working ( not just the option ).
  9. Paid Carer’s leave to be introduced .

What would I like to see for the future of Young Onset Dementia care and carers?

Put quite simply ‘ I want carers of people with Young Onset Dementia to become Experts by Experience out of choice NOT necessity .

Sarah is Head of Campaigning and Influencing and currently studying a Masters in Dementia Studies. You can read more of Sarah's blog here

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