Dementia and COVID-19: Four big problems, three solutions

Summary

Day 1, Dad goes into a care home so Mum can have respite care. Day 5, the care home provider announces a lockdown is in place. Day 12, Dad develops a raging temperature. Day 13, he develops a persistent cough, and they try to evict him back home to Mum.

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Content

My dad is 60 years old. He was diagnosed with young-onset dementia 3.5 years ago. For the past 2.5 of those, he has been relatively stable – a slow, but steady decline. In the past year, he’s changed dramatically. 

Problem 1 – why were they left with no ongoing support?

As Dad is young, he slipped through the net of adult social care. Apart from a home visit 3.5 years ago, my parents have been left to deal with the dementia by themselves. No one knew who should pick his care up. Just before Christmas, we hit crisis point – Dad’s behaviour was becoming far too difficult and unpredictable for one person to handle. 

In February, we’d had another home visit and a checklist assessment was carried out. This was the first step towards help through an NHS Continuing Healthcare assessment. 

Problem 2 – No protocol in place for adults with young-onset dementia

Fast forward a month, and adult social care has washed their hands of Dad. Even though he’s an adult, he doesn’t fall under their team. He falls under the mental health team – and even though they work in the same building, his case hasn’t been transferred internally. The request for help has to be resubmitted. So, we start again. 

Problem 3 – COVID-19 hits

The COVID-19 pandemic is a stressful time for all of us. But for carers, there’s an extra layer of uncertainty – how long will any respite or day care continue, before they’re left out in the cold?

More pressingly for our family, Dad’s care home went into lockdown while he was there for respite. It meant we faced the agonising choice – leave him there for the foreseeable, or know that we would have no help, support or relief from his 24-hour care needs. We opted to leave him there.

A few weeks later, the fever started. The next day, his persistent cough developed. The care home wanted him out and asked my mother to collect him – against all Government and NHS advice. They risked him passing it onto her. My initial concern was if he did, who would call for help if she needed it? 

The situation calmed and he has been allowed to stay for at least the remainder of his period of self-isolation. But, while he’s there he’s just sitting alone in his room. No one to talk to, no comprehension of what’s going on outside. Nothing. What will he be like after self-isolation? Will his dementia deteriorate rapidly? Will he recognise anything afterwards? Only time will tell. 

Problem 4 – the financial assessment

As part of NHS Continuing Healthcare funding, the adult social care element requires a financial assessment. (Yes, you’ll note adult social care is apparently taking an interest now money is involved.) They ask that you try to fill in the mammoth form within 7 days. It’s overwhelming, especially in the middle of a stressful situation. You’re given no information as to what support package you might be offered – but expected to give out some of the most personal details about yourself. 

The pandemic has exacerbated an already overburdened sector. There’s no face-to-face support for those overwhelmed with documentation. There’s no time to explain what it all means. There’s no time for help for those who need it.

How can the Government help?

Government has stepped in to provide much needed help and support to many people – but their job is essentially fighting fires. Adult social care is a ticking time bomb, and it’s putting people’s lives at risk. I’ve three asks of them:

• Care assessments must continue.
• Care homes must treat those with COVID-19 in line with NHS and Government guidance.
• Adult social care services must be adequately funded to allow them to fulfil their duties and provide support during this nightmare time.