Spotlight on the deterioration of dementia this Dementia Action Week

The pandemic has created an undercurrent of issues for the disabled community, advancing symptoms through isolation. For people living with dementia and their loved ones, the decline has been significant. Emma Storr investigates.

Dementia is being forgotten. Left behind, at higher risk of COVID and often without access to vital care providers such as family, people with dementia are deteriorating.

An independent survey by the Alzheimer’s Society of 1,000 people affected by dementia found that 92 percent of loved ones noticed a more rapid increase in dementia symptoms, while 79 per cent of care home managers said the lack of social contact throughout the pandemic was causing deterioration in residents.

Decline

Lack of routine, socialisation and regular services has meant a faster decline in physical and cognitive condition. For some families, this has meant losing their loved one faster than expected.

“It’s been an absolutely terrible, tragic year for so many people affected by dementia, and I can personally relate to some of the challenges,” explains Kate Lee, chief executive of Alzheimer’s Society. Kate’s mum has lived with dementia for 16 years, in a care home since 2019.

“As a family, it was incredibly difficult not being able to see her, especially as we play a vital role in her care.”

With the pandemic continuing, Kate became concerned that her mum was deteriorating faster without seeing the people that she loved.

Lorraine Davies, a dementia support worker for Alzheimer’s Society, shares Kate’s concerns. “Our Dementia Advisers, who the players of the People’s Postcode Lottery help to fund, regularly check in on people affected by dementia to make sure they have the right basic support they need.

“We’ve had people tell us their loved ones have lost the ability to communicate or dress themselves forever,” admits Lorraine.“They might not have next year to celebrate missed occasions.

“Many people are much further down their journey now, and they can’t just pick up where they left off,” continues Lorraine. “We’ve still been having referrals coming in too, dementia hasn’t paused, even if most of the world has.”

Carers

Dementia can be a lonely experience for people with the condition and their families.

John is a carer who has witnessed the accelerated decline in his wife Linda, with the couple being supported by Dementia UK. As well as caring for his wife, John cares for his daughter Katie, who has Down’s syndrome. At the beginning of the pandemic John made the decision to shut off the outside world to protect his family, taking on all caring responsibilities alone .

“It was affecting me both mentally and physically. I’ve never suffered from stress like this before,” remembers John.

When Linda was admitted to hospital due to a bedsore in January 2021, her condition started to deteriorate rapidly.

“I was worried that if she went in, she wouldn’t come out again,” admits John. “Thankfully she did come out after two weeks but she refused to feed in hospital. Speech therapists actually said she may not feed again. They said she may not have that long; I was even referred to a hospice,” reveals John.

When Linda was discharged and returned to an environment that was familiar to her, she began to feed again, but during the pandemic Linda has lost cognitive skills, including the ability to walk, that will never come back.

Lesley Potter is an Admiral Nurse, working in partnership with Dementia UK, a specialist dementia nurse supporting families. Lesley has continued to support people living with dementia and their loved ones, including John, experiencing instances of dramatic decline and the strain on carers.

“It’s hard to plan something when you never expected it to happen but I think the most concerning thing is the lack of understanding of the trauma that a lot of carers have had to encounter,” highlights Lesley.

“John is providing a role for both Katie and Linda and without him that would all fall apart,” stresses Lesley. “The reality is it has just been unsustainable for a lot of families and they quickly realise that you can’t do it alone.”

Essential

Importance of family support and socialisation has never been more prevalent.

“We know that the essential role of the family carer isn’t fully understood – for many, this is the person who understands when their loved one is in pain, gets them talking, eating, and taking medication,” explains Kate. “On top of that, depriving people of what they live for, their loved ones who know them best, is leaving them confused, sad, and simply fading away so much faster than is normal.

“Coronavirus has exposed the dire state of the social care system – never again must people with dementia suffer such tragedy.”

High quality, easy-to-access care is what Alzheimer’s Society is calling for this Dementia Action Week.

Taking place from 17 to 23 May, Dementia Action Week is an important part or improving the lives of people affected by dementia.

For this year’s awareness week, Alzheimer’s Society is calling on the government to cure the care system now, allowing nearly one million people with dementia and their families to get the support and care they need and deserve.

“The legacy of this pandemic must be the government rebuilding the social care system so every person with dementia and every carer gets the quality support they so desperately need,” Kate concludes.

If you or a loved one needs support visit the Alzheimer’s Society or Dementia UK.

Products for dementia care

Products can be a lifeline. Pivotell has multiple products for support.

Advanced GSM Pill Dispenser with App Alert Message
£165 exc VAT (VAT exempt for the chronically sick or disabled)

Easily filled and programmed online the Pivotell Advance GSM can dispense pills up to 24 times daily. At the pre-programmed times the dispenser alarms, rotates and presents the medication. SMS, Email and App alert messages can be sent to family members or carers to confirm that medication has, or has not, been dispensed from the device.

Jointly app with Carers UK

The Advance GSM pill dispenser works with the Jointly app by Carers UK, relieving the stress of ensuring medication has been taken for people supporting at a distance. The Jointly app is designed to make caring easier, less stressful and more organised by making coordination between those sharing care as easy as a text message.

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