On Air Now Nick Osborne 10:00am - 3:00pm Crystal Waters - Gypsy Woman Schedule

World Alzheimers Month: "What Is Obvious Is That There Is Very Little Official Support" 

Geraldine and Patrick Durrant

To mark World Alzheimer’s Month this September, a Sussex woman caring for her husband with dementia has shared her diary posts to help others in similar situations know they are not alone.

Left to Cope Alone: The unmet support needs after a dementia diagnosis, was a report released in July by Alzheimer’s Society. It revealed more than three in five (61%) people affected by dementia in the South-East did not feel they had received enough support in the last 12 months.

A second survey of 1,000 people affected by dementia also published earlier this year, showed more than half (54%) of family carers reached crisis point in the last year alone, with families having no idea of the support available. This left people with dementia at risk of going to hospital with avoidable conditions like falls or urinary infections, creating unnecessary pressure on the NHS. 

Geraldine Durrant from East Grinstead, is a former journalist and author who has been looking after her husband Patrick. She began charting the emotions and turmoil that come with being a full-time family carer, in a diary aptly named Midsummer Madness, after 78 year-old Patrick was diagnosed with Lewy bodies dementia on 21 June last year.

She quipped:

“Nothing however dreadful is wasted on a writer! I began the diary when he was first diagnosed as it helps getting things off my chest. After reading stories from carers online, I realised others might recognise their struggles in our own and feel less alone if I shared it. So I did, changing our names to James and Georgina to preserve my husband's privacy at first, which has stuck.

“It is not all doom and gloom but also discusses light-hearted things that happen in our lives, as I try to inject humour but portray the reality. Putting pen to paper helps me deal with grief. His diagnosis caused a huge ripple in our pond, and we felt on our own from the beginning of this journey.

“I was surprised that following Patrick’s diagnosis, we were not called in by the GP. It took a long time to navigate the system so if the blog can help direct people in the right direction during their difficult times, I will take that small win.

“Patrick was recently in hospital for five weeks with an infection. They promised to send him to a local care home for rehab while we got a care package in place. But they would not send him home to me without a care package, and I could not fix a care package as there were no available carers.

"I got the impression my husband would have been in hospital indefinitely, so used a significant amount from our savings to pay privately and get him into a local Dementia Care Unit. What is obvious, is that there is very little official support. 

“It would have been cheaper to send my husband to the Caribbean for a fortnight holiday than have respite at home. It would be one thing looking after someone with dementia if you were fit and in your 20s, but I am an old lady with a couple of replacement joints."

Alzheimer’s Society is calling for every primary care network to use the government’s funding for support roles in primary care to provide at least one dementia support worker in their area. These are specialists in the community who provide the missing link between people affected by dementia and support after a diagnosis. 

A primary care network is a group of local community, mental health, social care, pharmacy, hospital and voluntary services working with GP practices to provide integrated health and social care for people close to home. 

Alzheimer’s Society Area Manger for Sussex, Jolian Ardolino said:

“Post diagnostic dementia support is unequal, inadequate and inconsistent, leaving families without the necessary care they need to get through some of the hardest and most frightening times of their lives. People need the right support from the moment of diagnosis. 

“Having a dedicated dementia support worker in every area would plug the gaps we are seeing in primary care, give people the one point of contact to help them navigate the health and social care system and ease pressure on health services. Dementia support workers provide a crucial link between the 26,520 people living with dementia in Sussex and post diagnostic support."

There are more than 15,300 people affected by the disease in West Sussex, and over 11,000 in East Sussex.

Dementia is a complex condition and support needs are often more specialist than those provided by primary care currently. They include help with daily tasks, fall prevention, going to community groups and talking therapy to improve wellbeing and prevent mental health crises. Alzheimer’s Society claim that this type of support could be arranged through close relationships with dementia support workers.

Dementia was the leading cause of death in England in July this year accounting for 11 percent of all deaths. It was also the 13 consecutive month as the country’s biggest killer.

For support and advice on dementia, call Alzheimer’s Society on 0333 150 3456 or visit alzheimers.org.uk. You can read Geraldine’s diary, Midsummer Madness here.

More from Sussex News

Your News

It’s easy to get in touch with the More Radio News team.

Add you phone number if you would like us to call you back