In national Dementia Awareness Week, The News has launched its Take Care Together campaign to raise awareness of dementia and support those affected by the condition. Health reporter Priya Mistry speaks to a woman who cares for both her mother and aunt, who have dementia, and explains the complexities of the condition.
Sitting in an armchair watching television, I get a nice warm smile from Elaine Taylor as though she was expecting me.
Her daughter Ellie Savidge reminds her mum that a reporter from The News has come to talk to them about how 81-year-old Elaine can be forgetful at times.
Elaine, who is still smiling, politely, responds: ‘I’m sorry, I’ve forgotten.’
Although the sentiment is laughed off, the seriousness of living with dementia is very real.
That forgetfulness is something both Elaine and Ellie have lived with for almost a decade – and things never get easier.
Ellie also cares for her aunt, Jean Anderson, 86, who was diagnosed with vascular dementia 12 years ago.
Ellie says: ‘My mum moved in with us in 2009 because of her arthritis. She had been living on her own but was finding it difficult to move around.
‘After she moved in I started to notice she was confused about a lot of things.
‘She wouldn’t know what time it was or the date or seasons. All of that just disappeared.
‘My mum had been good at remembering birthdays, Christmas, and other details like that – for a while I think she had tried to hide it from us but once she moved in it became very apparent.’
A brain scan led to Elaine eventually being diagnosed with Alzheimer’s.
‘The hardest thing was that as the doctor was telling us this, my mum was just nodding and saying “okay”,’ adds Ellie, 42, from Cosham.
‘She had been diagnosed with a condition that was giving her the brain of a 95-year-old, and there’s nothing you can do to stop it.
‘It’s heartbreaking to see, utterly heartbreaking.
‘He said the oxygen isn’t getting to her brain and it’s just so hard that my mum doesn’t even know it will get worse.
‘She doesn’t know who I am, she doesn’t know who she lives with or where she lives, which is hard to take because your mum doesn’t know who you are any more.
‘And because it’s degenerative this is only going to get progressively worse. I have to forget everything I remember about my mum and my aunt because they aren’t those people any more.
‘If I think of how they used to be then it upsets me, I have to bury that and help them as they are now.’
Part-time teacher Ellie gets support from carers and also takes her mother to The Patey Day Care Centre, in Edinburgh House, Portsmouth, which is a site that helps those suffering from dementia.
‘She loves going to the Patey centre and enjoys herself so much,’ says Ellie. ‘But she has no recollection of being there so each time we go she gets confused as to where we’re going.
‘That must be so scary for her – I can’t imagine how she must feel each time that happens. Diagnosis with my mum was much easier because I have done a lot for my aunt Jean who was diagnosed about 10 years ago. My aunt was an obsessively tidy person and had different cloths for different surfaces and didn’t have a thing out of place.
‘But then we got a call from her neighbour to say we had better come over.
‘At the time my aunt lived in the midlands and we would visit two or three times a year, and when I went to check on her I was so shocked at what I saw.
‘She was quite a heavy smoker and there were burnt-out cigarettes everywhere, she had been shopping and had a shop counter on her table, there was frozen food left out on the side and a ceramic kettle that was empty heating up on the hob.
‘It was so scary to see and I felt traumatised by it.’
As Jean had no family, Ellie moved her aunt down to Portsmouth and helped her move into a flat before getting a diagnosis.
She adds: ‘Financially that was a big strain on all of us and my aunt became my responsibility. I am fully responsible for both my mum and my aunt, but as I work part-time I’m not entitled to get any financial help from the government.’
Ellie also looks after her children Deja, 10, and Aura, seven, getting support from her husband Andy, 43.
She is backing The News’ Take Care Together campaign which has three pledges – increase awareness, have more dementia friends and make sure everyone affected by dementia has someone in the Portsmouth area to tur to.
Ellie adds: ‘We can’t do anything that people take for granted. We have to organise care for her if we’re to go away and even then we can only get help for six hours.
‘When we go away to Devon for a week we have to put her in a home and that’s really scary and confusing for her and obviously makes it difficult for us to leave.
‘As someone who cares for two people with dementia, I can feel quite isolated
‘ I have really great friends and my husband is very supportive, but we need to raise awareness of this so the wider community understands.
‘Apart from the practical and physical strain it puts on you, it’s also the emotional load of it. I hope this campaign will help those who are in a similar situation to me and help others recognise dementia and provide help and support.’
Symptoms of dementia
THE word dementia describes a set of symptoms that may include memory loss and difficulties with thinking, problem-solving or language.
For many, the changes may often be very small to start with, but can then become severe enough to effect every-day life.
A person with dementia may also experience changes in their mood or behaviour.
Dementia is caused when the brain is damaged by diseases, such as Alzheimer’s or a series of strokes.
Alzheimer’s is the most common cause, but not all dementia is because of the disease.
The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the condition.
One person’s experience of dementia can vary massively to another’s because the condition is unique to each patient.
They will often have problems with some of the following:
- Day-to-day memory – difficulty recalling events that happened recently.
- Concentrating, planning or organising – difficulties making decisions, solving problems or carrying out a sequence of tasks such as cooking.
- Language – difficulties following a conversation or finding the right word for something.
- Visuospatial skills – problems judging distances such as on stairs and seeing objects in three dimensions.
- Orientation – losing track of the day or date, or becoming confused about where they are.