Disappointing support after dementia diagnosis
Many people are left in a state of shock and confusion due to the lack of care and support after a Dementia diagnosis.
Statistics show that around 60% of patients have said that after diagnosis they do not feel adequately supported to cope with the diagnosis they have received.
Nobody gay or straight should face Dementia alone.
Admittedly the services are stretched to breaking point by the current overwhelming demand for diagnosis,
Good quality support around the UK is a bit of a lottery.
Getting a speedy diagnosis in the UK can be patchy to say the least with some people getting a diagnosis within 8 weeks to others having to wait 6-12+ months which we all know is unacceptable.
The care system can often leave loved ones confused and unsupported when it comes to the choices they have to be make.
What we need in many departments of the NHS as well as dementia care is joined up thinking which will enhance care given across the board.
If one department is not conversing with other departments then patients may slip through the net and be left not knowing which way or who to turn to for support.
The NHS system in place now is complicated and is leading to increased waiting times which leave many patients wanting and may cause a crisis for the patient which could lead to hospitalisation and a set back in symptoms.
Granny has always advocated that care should be personalised to the patient’s individual needs more so with LGBTQ members.
After seeing what a difference good care can bring ie an all-round improvement in cognitive behaviour and speech and general well-being when indepth support is in place and it can not only improve the lives of the patient but also their families.
We need a network of support not only to patients but to those nurses and doctors who are inhibited in their work due to the appalling situation they regularly find themselves in.
Too busy or not enough time or we don’t have the staffing levels are often remarks we here. This has to change.
At all times you are only trying to get the best possible care for your loved one so why are there so many obstacles in the way.
Examples
1 Poor access to health care in the patient’s local area
2 Difficulty in recognising symptoms
3 Unfortunately, there is a degree of stigma associated with dementia due to lack of public awareness.
Many family members and friends can be uncomfortable with their loved one being diagnosed with dementia thinking it will cause embarrassment; you must remember that it is not their fault and that the person you loved is still there and you need to find the inner strength to love them even more through the difficult times ahead.
4 Your GP may not be fully confident in giving a diagnosis and may opt for a referral to a diagnosis specialist clinic.
5 Family opinions may differ as to how to proceed.
6 As is often the case there may be limited support services due to lack of local govt funding and high demand on specialist service’s.
It is so important to receive an accurate diagnosis so when attending a diagnosis appointment make sure you write down any important pieces of advice given by the specialist, this will help in later dealings with officialdom.
Always remembering if you are resigned to having to pay for your loved ones care that many decisions from assessor’s and referral teams will be financially motivated with the bottom line in life unfortunately being monetary.
You may be surprised as to the cost of the care package that is put forward for your loved one which can over a period of time deplete a patient’s savings.
Until those savings have been exhausted you won’t be able to receive assisted care. There are two capital limits, the lower is £14,250 the higher is £23,250.
The upper limit is when a person’s capital is above the UCL limit and they will be expected to pay for the patients care.
The lower limit is when a patient’s capital is under the LCL they will only pay what they can afford from their income and the remainder being paid by the Govt.
There are no upper capital limits when on pension credit however if the patient has more than £10,000 in capital they may have to contribute a smaller amount.
Please don’t wait for a diagnosis if you notice different patterns of behaviour from your loved one then please see your GP and discuss the matter with them urgently.
The quicker you get a diagnosis the more help is available to reduce or possibly slow down the progression of the illness.
Everything that is being done now plus any improvements in the future can only succeed with your support.
Thankyou for your support in 2024 and Granny hopes you can continue your support into 2025.
