Karenza Frear out with her sister and dog.

Dispelling myths: A daughter who wants others to understand

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.’

Simple things

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 ‘When he was withdrawn, we thought he might have depression.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.

Karenza Frear and her dog, Billy

Karenza wants people to know that dementia isn't only about memory. 

Hospital hallucinations

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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Never easy

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 Frear with her sister and dog

Karenza with her sister Jannah and dog Billy.

Very unpredictable

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.’

Most important

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.’

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Dementia together magazine: Feb/Mar 20

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15 comments

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Barry taught me ‘A’ Level Politics. He was such a brilliant man; I leant so much. I am sorry to learn of his passing. Karenza’s story will assist so many who suffer from this difficult disease.

What a superbly well written article to raise the awareness of the many different types of dementia.
I am sure your father would be proud of the work you are putting in to raising this awareness.

I relate to your last sentence ,I to watched my dad screaming out and oblivious to where he was, my dad was an intelligent man,it broke my heart to watch him die slowly over 8 years, I pray for a cure x

I hope Karenza's story/information is seen and digested by many people, it is a good insight to other signs of this devistatingly 'robbing' illness.
Both my mum and a dearly loved aunt had demensia and yes, in hindsight, there were earlier signs that something was wrong, and yes, both tried to mask issues.
We were lucky in that my mum never forgot any of my or 4 sisters names, no worse than she ever did (when you have five children), and she kept her sense of fun, for a lot of the time. She actually died of a massive stroke.
My aunt seemed to suffer in a different way, became confused easily, went walking at night just in her nightgown and achually got bus into town? attacked prople, seemed to know people most of the time. Actually fell out of bed in nurseing home for demensia, broke her hip and died in hospital a week later.
I hope for a cure (miricle), for this horrendous illness and my heart goes out to people, who suffer the illness and to those around them, as everyone connected suffers too.
Xxxxxxxxxxxxxx

I had much the same experience with my husband who died just before Christmas. His GP laughed at me when I asked if his hip could be dislocated and told me “he would be screaming in agony if it was”. It was, but once found it had been out for too long to put back. When I mentioned this conversation to a young intern he said “not if he had dementia he wouldn’t “.
It was like a light going on and I thought at last someone who “gets” dementia. He said that there is a lot of training on dementia nowadays so perhaps there is hope for the future.

Wow it was like you were talking about my dad here was diagnosed at 70 with dementia and lewy body the same experience we had having to fight for care for dad . Dad passed at the age of 73 r.i.p.

My husband has Lewy body dementia and Parkinson’s, he has been in a nursing home for the last two years, he is 72, diagnosed with Parkinson’s when he was 58. I totally agree with you, dementia seems to be always portrayed as memory problems and funny moments, the reality is loss of mobility, cognitive abilities, behavioural issues, etc. He has to have a catheter as without he cannot wee, it’s seems his brain won’t tell him how. He has also been diagnosed with epilepsy, I could go on and list all the things my lovely husband can’t do...... he also removes his catheter almost daily causing trauma and enormous pain, goes straight into complete retention. There you have it dementia is a total nightmare.

So sad. So much to endure- by her father and Karenza. We must all work for dementia and the alleviation of the suffering it inevitably brings, to be a main focus in these times.

Hi Karenza, so sorry to read about your dad’s Dementia story, I can really empathise with you as we lost our dad to Vascular Dementia with Lewy Bodies on 27th December 2019. Like your dadm my dad Gary, spent over 6 months bedridden in hospital and for the last few months in a dementia nursing home. We are still fighting to retrospectively claim some money back as we believe he should’ve been assessed for NHS continuing healthcare funding and be entitled to it. Just how poorly does someone have to be?
It was so horrible watching my dad’s character being slowly stripped away and I totally agree there needs to be more awareness and understanding of the different branches of dementia. I am sure you article we go a long way to help with this. Much love and best wishes, Louise

My husband has Lewy Body ..since 2017 at the age of 65...he is at home with me...very disturbing illness , there is so many people out there who have never heard of Dementia...well we were one if them until it came out way..

My husband was 64 last year when he was diagnosed with LBD . Just yesterday we went out for a short walk and he suddenly felt wobbly on his legs and started to lean backwards. I got him back home slowly . Can l ask if your husband had ever had this symptom or have you heard of it ?

This is so accurate. My mother has the same condition and she had terrible hallucinations- it was like she was unable to tell the difference between reality and dreams. She became aggressive and frightened. She thought we wanted to kill her. She is in a home now. She can’t speak, can’t move much, has no quality of life and it definitely isn’t the way it’s portrayed on tv. It’s a horrific condition that hurts everyone touched by it.

Your article has helped me tremendously, thank you for writing it. My world has been flipped upside down. My sweet mom passed away on January 21, 2020. Her symptoms started April of 2019 is all, well my siblings and I look back and realize we missed them earlier. I will try to make this short. She kept wondering out of her home so I had her sleeping with my family in our home. She burst into my room one night saying she was a vampire I took her to the ER, they committed her into the physch unit. I was able to bring her home but she seemed more not with it. My aunt took her for a night to relieve me but almost immediately brought her back to the er, they once again committed her. This time the doctor said he thought it was catonia so she had 12 rounds of ECT. After 3 she was having conversations and wanted to go home. But after the 3 she was back to being nonresponsive. This was the end of September. She was in the hospital for 75 days. They finally moved he to care center. She was bed ridden, basically could not do anything for herself. She would not speak and was very ridgid. She had a couple falls an then had a very severe fall that ended up cracking her skull and killing her. I appreciate the stories on this post, my siblings and I have so many unanswered questions this helps a little. This disease sucks and is so awful we are grateful she did not suffer for years but feel so robbed of our young mom and grandma she was only 59!

Thank you for sharing your story, so familiar to ours. My father in law is 86 and bedbound since April 19 when diagnosed with LBD. He hasn't been aggressive but hallucinates often and doesn't really know where he is, currently in a care home which has been dreadful, failed CQC report yet they still charge £1400 per week, my father in law also doesn't qualify for CHC funding. Its just not right. We love him dearly but we just want to know how long this will last.

Thank you for sharing the experience of your family , my mother has just gone into a home with Lewy body I and my twin sister are finding it difficult to understand what is going on with my mother , her hallucinating her in ability to control her toilet needs , she cannot walk and has to have help standing, it has happened so quickly in October 2019 she was fine now, we’ll clear you all see it she is a broken frail lady

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