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 ‘When he was withdrawn, we thought he might have depression.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

Dementia together magazine: Feb/Mar 20

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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I am going thru this process with my mother. Her condition has deteriorated. Very rapidly, she was working full time until March 2020 at this time she advanced her retirement because of the pandemic by 9 months. She was diagnosed with parkinson's Feb 2021, after being hospitalized for a completely unrelated ailment. She did good on her meds until Sept when her b/p started dropping, the became more confused and paranoid, started hallucinating and finally became violent because she was afraid no longer being able to recognize what was real from what was in her mind. We admitted her to a psych unit on the advice of her neurologist for "stabilization", at first they told us her Parkinson's meds needed to be adjusted, which neither the unit nor her neurologist has done. Now she is on a memory care unit, with a dx of "Parkinson's dementia", appears well taken care off. But on a good day, she does not know where she is and is constantly seeing a cat, the one animal that she's always been afraid of, following her around. She has lost a lot of weight in the past few weeks, yet states she is not hungry. She takes 7 prescription meds when one year ago she took none.

Reading your article has been like reading how my life is currently panning out with my mother. She has recently been in hospital following hallucinations and delirium which was initially put down to a urine infection however, this was ruled out so they tweaked her Parkinson medication which also seemed to make her worse. She has had no formal diagnosis of dementia as no scans or other tests have been carried out but she is now in a nursing home for dementia for further assessment. It is incredibly hard hearing her go through the trauma of being so scared all the time. My sister and I cannot be there with her due to the Covid restrictions currently in place. Thank you for writing your experiences down. It has made mums journey more understandable.

I am 73 . I had been visit with a nurse in drug and alcohol addiction for a few months, re alcohol. We spoke about other things in my life as she said she enjoyed my adventure life style. ( in the past) ..on my last visit she elaborated on her life and said she had concerns about my mental health. I had told her about my hallucinations , acting out my dreams/ nightmares throwing myself out of bed . Unsteady gate , falls , short black outs loss of interest in most things that 12 months ago I was enjoying. I have dreams whilst some are mainly about things I have been tasked to do that are impossible to complete. I wake & know it’s a dream but I fret about it for some time. The nurse told me her mom had the same problems, alcoholism, and was diagnosed eventually with lewy dementia, & advises me to speak to my GP, saying he may not be aware of the condition. I showed my wife the symptoms on a dementia website, ,her comment was did you write this? Sorry to ramble on, I really feel for the carers out there...

I think my husband has LBD. He was told he has PD in 2015
But I knew he had that in 2012 and before that there were signs there was something wrong. Who can help me through the maze of applying for funding?

Hi Monica,

Thanks for getting in touch, and sorry to hear about your husband's condition.

The best thing to do is speak to your GP, if you haven't already. This is important because getting a formal diagnosis can be necessary when accessing certain funding and support services.

If you've already done this, or would like to speak to one of our trained dementia advisers about your situation, please call our Dementia Connect support line on 0333 150 3456. We can learn more about what is happening with your husband and give information, advice and support.

Hope this is helpful, Monica.

Alzheimer's Society blog team

If your husband has LBD, get him to a neurologist who specializes in LBD. As far as funding look to see if you have an elder care attorney who can help you apply for Medicaid or a Care home can also help you with your application.

Thank you for a sharing very helpful and insightful personal story. My dad has a similar story. After a fall he was admitted to hospital and the registrar provided a diagnosis of Lewy Body Dementia. Suddenly all dad's symptoms and behaviours made sense to us. My mum was told previously he may have Alzheimer's/dementia but no one up to that point asked mum about hallucinations any other challenges he was having. And my mum wasn't either prepared to acknowledge changes beyond dad's confusion and memory loss. LBD is chlenging for carer's on so many levels and more can be done to help identify early signs, and prepare for care early

My husband was diagnosed with Parkinson's disease in 2013, and we had been managing reasonably well until we were on a long haul flight coming home from holiday in March this year. Neither the cabin crew nor myself had any idea what he was trying to tell us. Since then there has been a rapid decline. He has been hallucinating badly and wandering about all night, which meant I was sleeping with one eye open. He had even forgotten how to get into bed, and his balance was very bad. He has been in hospital now for three weeks on the advice of his consultant, and I think the next move is going to be into a secure hospital, which I know he will hate. It has been quite a shock to witness such a rapid change in him. At first I was willing to accept the fact that it might be jet lag, but he didn't seem to improve after weeks of being back home. I hate to think of condemning him to the rest of his life in care, but can see no other option.

For the last year I have been concerned that my mum has LBD. she was taken into hospital March 2019 after a fall, of which she had had many, after 4 months in hospital with ‘nothing medically wrong with her’ , it became clear she could never look after herself again and has gone to a care home. She has so many LBD Symptoms which with hindsight I have seen developing over the years, I tried to speak to the hospital, they just weren’t interested (she is 86) and now her GP but am dismissed as my mum had a memory test in which she did very well, I was also told mum has to agree to any consultation but her motor skills are now deteriorating rapidly, she often has to be given instructions to do things or she asks what do next. She frequently appears ‘switched off’, her mobility has gone from shuffling which started 3 or 4 years ago to wheel chair bound. These are not the only symptoms, she has had incontinence issues for years, dreams which she believes are real and had wild sleep for years. She now sleeps 18/20 hours a day and has no motivation despite lots of stimulation around her.
How can I get help?

Hello Alison, thanks for getting in touch.
We are so sorry to hear about your mum's condition. This must be such a difficult time for you, but please know that we're here for you and there are people you can talk to.
For dementia information, advice and support, you can also call our Dementia Connect support line and speak with a dementia adviser on 0333 150 3456 - you can find more details and opening hours here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
Additionally, if you'd like to talk to other people either living with or affected by dementia, our online community Talking Point is available 24/7: https://forum.alzheimers.org.uk/
We hope this is helpful, Alison. We wish you all the best at this difficult time.

My mum also died in December 2019 of complications with her LBD. Luckily for us she had days of lucidity that definately keep you going. There were also many that weren't. The whole medical system is an exhausting battle, not very often won. My mum was sweet natured, and her personality remained mostly. I miss my Mum every day.

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

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.

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!

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.

My dear Mum aged 81 has just been diagnosed with LBD. This accelerated beyond belief during lockdown and we moved her in with us.
Her hallucinations are terrifying for her ...she sees people with their mouths sewn up, eyes hanging out on bloody tentacles and fish coming out of their scalps crawling with maggots.
She sees funnier ones too where people are skateboarding down the rooftops but most of them are awful. She sleeps at our house every night and we have family members helping through the day. She doesn’t recognise me as her daughter but says I remind her of her daughter. She believes that there are 2 of us all and will often ask if they’re the real one or the other one. She cries a lot, really sobs and all I can do then is hug and reassure her. Something that came about by accident was that she took an interest in my daughter’s Baby Annabel doll (I’ve now bought another smaller one as well) and she plays with them both constantly. She talks to them, cuddles them continually and when I turned the sounds on with them she cried tears of joy. These dolls have almost become her life and nothing else seems to matter. We go along with her “babies “ totally and I’m so glad that has some comfort in a world that must be like a constant horror film. She has gone from an active, bubbly, very kind and fun loving, huge fundraising, busy, sometimes bossy lady to a shadow of herself in 5 months and she now needs us to care for her full time. It is tragic to see her like this and so very sad but every morning when i go in to her after she’s woken me up (sometimes at 4.30am) she gives me the warmest, biggest smile and always asks what are we doing today?This is usually short lived as she can then get distressed almost immediately by “the lady bleeding on her bed” or “the girl with half her face gone” But that smile in the morning just melts my heart.

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 ?

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

Hi, I felt I had to reply to your comment, because my dad has vascular dementia, caused by a stroke three years ago. We were told that it wouldn’t be progressive, but it has been. More recently he has become often scared and frightened in his own home. He believes the neighbours are plotting to kill him. Sometimes he thinks people are in the house or the room. Hears voices often. He can be very agitated, paranoid and angry. I worry about my mum, who is currently caring for him at home. I believe there is something more happening than the vascular dementia. He has been seen by a dementia team and is taking various medications. I have no real questions really, as I know there is no one solution, but I just wanted to reach out. I hope you have been able to find some peace x

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.