Joy Watson, 59, from Eccles, was first diagnosed with the devastating condition four years ago and was forced to give up her job as a carer.
Since then Joy has had to watch as her memory diminished and has become increasingly reliant on the care provided by husband Tony.
Despite her condition, Joy became a champion for people living with Alzheimer’s and their families, and was praised by former PM David Cameron for campaigning to raise awareness about the condition.
And yet despite her dogged determination to the make the most of life, Joy was stripped of her disability benefits following a home assessment and is now struggling to pay household bills whilst her health and memory gradually deteriorates.
The cruel decision has left the couple shocked and around £400 a month worse off, at a time when Joy needs all the help and support she can get, whilst depriving Joy of the ability to enjoy life and live as independently as reasonably possible.
Joy was assessed for Personal Independence Payments (PIP) in April, as part of changes to disability benefits which will eventually see PIP replace Disability Living Allowance (DLA).
Despite her obvious problems Joy was denied PIP and told she was capable of caring for herself. She appealed the decision but the appeal was sadly rejected and Joy was awarded even fewer points than following the original assessment.
Struggling to remember her words, Joy told the Manchester Evening News: “I had to give up the job I loved and I don’t see any sense in this decision.
“I feel really as if I’m being penalised for trying to live well, I don’t think [the welfare system] is geared up for understanding people with dementia and their needs.
“They don’t see me when I’m fretting, when I can’t do the thing I want to do.
“I have had these benefits for four years since I got the diagnosis – do they not know that dementia is a progressive disease? I try to keep well but I’m not going to get better.”
Husband Tony says Joy is unable to manage her medication alone or cook in a safe manner, often taking her medication at the wrong time or more than once, forgetting to add water to a pan of vegetables or not turning off the gas once cooking is finished.
Tony added: “The assessment lasted about an hour and Joy did not move from the sofa once.
“She struggled to remember her words, her hands shook and although we explained she can’t make meals because she forgets to turn off the gas and she can’t manage her medicine – she mixes up her evening and morning tablets – their report said she is able to look after herself.
“I have tried to help Joy to be as independent as possible, to live as well as possible, she has always wanted to help others and I believe that going out and talking to people about dementia has kept her brain working – it is her passion and we are so proud of what she has achieved.
“Joy is an amazing woman and she has worked so hard to keep herself well – she looks great, people can’t always tell she has dementia and I can’t help feeling if she had sat on the settee and stagnated, we would be getting all these benefits now.”
As if the situation faced by the couple isn’t bad enough, Tony has also been stripped of Carer’s Allowance, plunging the couple even further into financial crisis.
Rebecca Long Bailey, MP for Salford and Eccles, and Shadow Secretary of State for Business, has been left disgusted by the DWP’s decision.
“It is disgusting to hear what Joy and her husband are having to go through”, she said.
“Not only having to adjust their lives with the continuing degenerative condition that Dementia brings, but to have the safety net of Personal Independence Payments and Carers Allowance pulled from under them.”
“I have written to the DWP and the Secretary of State for Work and Pensions to request they look again at the decision made. Unfortunately, having seen so many cases come through my constituency office this is not a rare case. “
A DWP spokesperson said: “Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.
“Anyone that disagrees with a decision can appeal.”
Last updated at 06:39 (GMT) on 15th August 2017.