Man left feeling ‘pushed aside’ in search for support after wife’s Alzheimer’s diagnosis
Paul has become a full-time carer for Sandy and has described getting financial and social care support as being ‘like banging your head against a brick wall’.
Paul and Sandy Kemp’s garden is bursting with colour.
It’s been tended to with extra care since the pandemic, with freshly planted flowers in each corner.
‘If you’d asked me four years ago if I had any interest in plants or things, I’d have said no’, Paul tells Metro.co.uk.
‘But the last three to four years have changed that. I’m determined to make it as bright as possible for Sandy. The more colour I can bring to her, the better.’
Sandy, a former carer, was diagnosed with early onset Alzheimer’s via video call in June 2021.
The 55-year-old had initially been treated for depression before a doctor noticed symptoms consistent with the disease.
However, because of lockdown conditions, scan results did not come until the following year.
‘The original diagnosis journey was really hard, Paul, 57, explained.
‘It took over a year-and-a-half to go from seeing the GP and getting to take that first step. Dementia as a disease does not wait, that’s far too long.’
Paul and Sandy spent months having scans and appointments – with large periods in between waiting for answers. They were then promised a follow up call in six months time, and it never came.
The process left them feeling ‘forgotten’.
Paul has become a full-time carer for Sandy and has described getting financial and social care support as being ‘like banging your head against a brick wall’.
He added: ‘I’ve felt so angry over the years, it feels like she’s been pushed outside. There’s not enough being done or said about how families struggle – it’s behind closed doors.
‘And what I hadn’t realised was how many people there are across the country suffering through the same thing who are caught in the same circles as I am.’
Sandy’s situation is worsening, but Paul is determined to have her stay at home where her surroundings are familiar.
He’s taking inspiration from Sandy herself, who helped hundreds in her lifetime through her work as a carer.
Paul is now working alongside Alzheimer’s Society to speak out and demand change for those affected by the condition.
He’s reaching out to others in the situation and offering advice to families at the beginning of their journey.
No matter how hard it gets, he has no plans to slow down.
Paul added: ‘Sandy was such an inspiring person. She would talk to anyone and was so selfless. She helped people her whole life, now she needs help.
‘Standing up and making more people aware of it now might not make a difference for us, but it might help people further down the line. That’s what Sandy would want.
‘People need to be aware of what people like Sandy and I are going through and things need to change. The more people I can talk to, the better. If I could turn the heads of a 16th of the population of Great Britain, I’d be so happy. It makes us proud to make a difference.’
Paul joined the Alzeimer’s Society on Wednesday in handing an open letter to Steve Barclay MP, Secretary of State for Health and Social Care, to make sure the charity’s calls for dementia in the new Major Conditions Strategy reach the very top.
The letter has been signed by 11,500 people and counting.
Jennifer Keen, Alzheimer’s Society head of policy, said: ‘900,000 people in the UK live with dementia and, as the leading cause of death in England, it is vital the Government makes dementia a priority.
‘We need the Government to commit to a funded plan for improving dementia diagnosis rates, which hit a five year low during the pandemic and have stagnated ever since.
‘Without a timely, accurate and high-quality dementia diagnosis, tens of thousands of people are in the dark about the support and treatments that may be available to them and won’t be able to access breakthrough treatments coming down the line.
‘We are calling on the Government to collect data at every stage of the dementia pathway to ensure people living with dementia are at the forefront of decision-making.
‘We hear every day from families about the nightmare of navigating our disjointed health and social care system, as we’ve seen with Paul and Sandra Kemp. That’s why in only a few weeks, over 15,000 people joined them in signing our open letter calling for the Government to address the specific challenges of dementia through its Major Conditions Strategy.
‘A whole system challenge needs a whole system solution, the voice of people affected by dementia must not be ignored.’
Become a campaigner with Alzheimer’s Society to help make dementia the political priority it needs to be. Action.alzheimers.org.uk/signup
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