Olivia Kennedy is a financial planner at Quilter Private Client Advisers. Her late mum suffered from dementia, and she found navigating the social care system a big challenge.
She shares her story and offers practical tips on what is available to dementia sufferers and their carers, and how to persevere and get the best assistance possible for them.
Shocking figures on the rise of dementia are reported regularly these days, but it can be hard to grasp the full reality of it because this is one of those things you think will never happen to you.
My mum was diagnosed with premature dementia in 2002 aged 62 and died in September 2014 aged 75.
It was a long journey often called the long slow goodbye as you lose the person you knew very slowly. While in my case my mum never really stopped knowing us, she did lose her identity and a sense of who she was.
My sister looked after my mum during the day four days a week while already being a single parent with a toddler at home.
Meanwhile, I sorted personal hygiene and weekends – I too was a single parent but my son was much older.
Our step-dad did the overnight care and the daily household stuff. This was a complete change of roles for them as they had been a traditional couple. Mum did all the household chores and home maintenance. Our stepdad couldn’t even change a plug!
None of us realized at the time what toll it took on us as carers – it just slowly got worse and worse. The health of all of us deteriorated and our relationships suffered. I had to date my second husband at my mum’s house at weekends.
Apart from the emotional challenges of dealing with a loved one with dementia, there are also reams of practical and financial difficulties.
Many people are aware that the current social care system is means-tested so anyone whose assets exceed £23,250 pays for their social care needs. However, what is less well known is the other benefits that are available.
Even as a financial adviser I struggled to navigate the system, but during my mum’s time at home I made sure that I understood the very complex funding rules over home help, daycare, and finally residential care.
These include:
NHS-funded nursing care: The standard rate currently provides £165.56 per week, paid directly to the care home, for anyone who has been assessed as needing care from a registered nurse or a care home registered to provide nursing care;
Attendance allowance: This is for anyone over 65 who needs help with personal care, but the amount a person gets depends on need, with the higher allowance at £87.65 and the lower rate at £58.70;
Carer’s allowance: A benefit worth £66.15 per week that can be paid to carers who spend at least 35 hours per week looking after or supervising someone;
Discount on council tax: Some people with dementia are eligible for a discount on their council tax bill and sometimes those who care for them are eligible too.
By 2007 it was apparent that we could not maintain my mum at home any longer and she went into residential care and then nursing care.
In 2012 our mum had lost the ability to communicate on any level and was bed-ridden yet it took another two years for her to die.
During this period she benefited from NHS continuing healthcare, which is a package of care for people who are assessed as having significant ongoing healthcare needs that is arranged and funded by the NHS.
If you qualify the NHS pay for care home fees, or if you are staying in your home they cover the cost of the support you need.
However, the assessment process is far from easy and during the last three years of my mother’s life she had three reviews with NHS continuing care.
Each review appeared to be an attempt to remove funding. On the last occasion a few weeks before she died the assessor tried to tell me she had improved.
Each NHS continuing care review appeared to be an attempt to remove funding
By the time mum went into a care home, I knew the rules inside and out and that was completely necessary as I found the system complex and unsupportive.
I would regularly have to challenge the social services on the correct process to follow for self-funding and for NHS continuing care assessments.
The current social care system isn’t fit for purpose, which has been acknowledged, but a fix still seems like a long way off. So for the time being if you are a carer, it’s important to do your research.
Ask for help and challenge decisions made by the authorities if you don’t like them. It’s their duty to explain to you why they are right or in your loved one’s best interest. It is not for you to explain to them why they might be wrong.
But ultimately the best advice I can give is to get advice. If you can afford it, seek advice from a financial adviser that holds suitable qualifications in long-term care and later life planning, and will be used to negotiate the complexities.
Read more about what disability support services are available in Australia.