After helping to support her late father, Karenza Frear knows how devasting dementia with Lewy bodies can be.
‘I want to dispel a few myths about dementia,’ says Karenza Frear, whose father Barry had a less common form of the condition.
Barry, a former university lecturer, had dementia with Lewy bodies. This can cause problems that many people don’t associate with dementia, such as with movement and hallucinations.
‘Dementia isn’t just about people forgetting things here and there,’ says Karenza, who lives near Taunton in Somerset. ‘The reality has been quite traumatic.’
Barry was a builder by trade, but later got a degree and became a further and higher education teacher and lecturer in politics, history and philosophy.
‘Dad was quite a quiet, contemplative person who liked the simple things,’ says Karenza, a senior lawyer for a registered social landlord. ‘He enjoyed chess but cycling was his favourite activity. It was the one constant in his life.’
Karenza, the oldest of three siblings, says that, although there had been earlier difficulties, a visit to New Zealand five years ago exacerbated these and made clear that something was wrong with Barry’s health.
‘On the way back from New Zealand, Dad had hallucinations and a major breakdown,’ says Karenza.
‘He’d been quite anxious in the build-up but put it down to not having flown for years’, says Karenza. ‘On the way back, he had hallucinations and a major breakdown. He was incredibly disorientated, he didn’t know where he was.’
Barry had experienced night terrors and problems with numbers and puzzles before the trip, but these hadn’t been connected with anything like dementia.
‘He lost confidence. It took approximately six months before he felt confident going out again, though he never fully recovered,’ says Karenza.
Worried and scared
A doctor put the incident down to severe jet lag, and nothing led the family to believe that Barry might have dementia.
‘We could always explain the changes in Dad in other ways,’ says Karenza. ‘When he was withdrawn, we thought he might have depression. When he struggled to take on board new things, I put it down to him not paying attention. Other times we said it was his confidence.’
‘I think Dad knew something was wrong but didn’t let on,’ says Karenza.
Karenza believes that her dad made sure the family only saw him on his better days.
‘I think he knew something was wrong but didn’t let on,’ she says. ‘Thinking back, he was probably quite worried and scared.’
Barry’s health gradually deteriorated. He had one fall, and he sometimes passed out if he got up too quickly after a daytime nap.
Around two years ago, Barry was taken to hospital after passing out. Aged 70, he remained there for a month, and he was diagnosed with dementia with Lewy bodies. He experienced very bad delirium and hallucinations in hospital.
‘It was horrendous, he’d suddenly become hysterical,’ says Karenza. ‘It was horrible to see him upset. Once he moved onto a side ward, his delirium eased and he became more lucid.’
Barry moved into a specialist dementia care home straight from hospital, where his partner and daughters visited him regularly. He was more settled in the care home, and Karenza recalls him interacting with other residents.
‘The home was well-equipped to deal with his needs, though I don’t think he ever knew he was in a care home, she says. ‘I think he thought it was a hotel or something like that.’
As she looked to best support her dad, Karenza found useful information on Alzheimer’s Society’s website.
‘It had easy-to-use guidance on managing symptoms, and how to navigate through the whole process from hospital discharge to what care and benefits were available,’ she says.
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Karenza successfully pushed for Barry to have an initial assessment for NHS continuing healthcare – a care package funded by the NHS. But they were then told he wasn’t entitled to a full assessment because he had dementia.
However, Karenza challenged this and secured the full assessment nearly two years later. Eventually Barry’s entitlement to NHS continuing healthcare was recognised, but that was nearing the end of his life.
‘None of it was easy. You’re constantly having to chase things up at an already difficult time,’ says Karenza.
Barry died in October, aged 72. ‘We were with him 24/7 when we knew it was end of life care,’ says Karenza. ‘That last week he was calm, no panic or hallucinations. In some respects, it was a bit of a relief.’
Karenza is keen for everyone to understand more about dementia with Lewy bodies, including health professionals.
‘It wasn’t Dad losing his memory, it was his inability to process things or learn new things,’ says Karenza.
‘I think people are getting more aware of dementia generally, especially Alzheimer’s, but I also think that the portrayal of dementia in film and television is slightly romantic – older people losing their memory but not really caring,’ she says.
‘It wasn’t Dad losing his memory, it was his inability to process things or learn new things.
‘The recent Elizabeth is Missing adaptation was very good and portrayed some of the aggression and the nasty side, but it still didn’t go as far.
‘Sometimes Dad would get frustrated, shout, swear a lot and smash things up. It was all the disease. But then he was also very polite and caring. His motor and mental functions could flip in a millisecond, it was very unpredictable.’
Karenza hasn’t always been able to identify with the outlooks of other people affected by dementia.
‘I’ve seen people saying that dementia isn’t the end of the world, but in my experience it was,’ she says.
‘It looked like Dad was going from one tormented nightmare to another. He was bedridden for the last six months of his life and, whenever I saw him, he was either asleep or screaming.’
‘The right resources can help you know what to expect,’ says Karenza.
Having seen the impact that dementia with Lewy bodies can have, Karenza advises people in a similar situation to seek out information, advice and suitable support.
‘The right resources can help you know what to expect,’ she says. ‘And if a person is receiving care, get them a care home that understands the needs of different types of dementia. For me, these were most important.’