women's experiences of dementia

Women’s Experiences Of Dementia

Introduction Emily This project’s funded by the Joseph Rowntree Foundation.

Audrey Joseph Rowntree? Yes.

Emily They’re paying for this.

Audrey Why?

Emily They want to try and encourage new thinking about dementia. We’re talking to women who have dementia, and women who are carers, either paid or family, to hear what you have to say about your experiences. And if you think being a woman informs that, the choices you’ve made and the things you’ve done in your life.

Audrey How long have we got? (laughs)

Emily More women have dementia than men…

Audrey Why?

Emily :HOO��ZH�ZDQW�WR�ÀQG�WKDW�RXW��QRW�DEVROXWHO\�VXUH��$QG�DOVR�PRUH�FDUHUV�DUH�ZRPHQ�

Audrey Yes, well, I can understand that. Because it’s usually their role in the family, to care for the less capable members of that family. It’s always been expected that this is the role of women. Thank you very much! (She

laughs). No sarcasm intended.

These are the people in this book:

We talked to Audrey, who, until her admission to York District Hospital, had been living with dementia, in her own home. We talked to a group of women and one man, at the Meri Yaadain Project in Bradford and we talked to members of The Club, Woodley Age Concern, a group for younger people with dementia. We also talked to a social worker and her sister, whose mum has dementia. We talked to a writer and blogger whose mum has dementia, we talked to a care assitant and medical student, and we talked to a woman who runs a care service.

Living With Dementia

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And you say, ‘Which is my engagement ring?’ And she says, ‘This one.’ And you’ve forgotten. Because we’ve both got engagement rings and they are very similar. You forget what things are like, you put them away and you forget. And when you get it out, you think it’s something different than what your mind thinks it is. Maureen, bank employee, Woodley, Berkshire

I live on my own, so I’m still looking after the house… Pat, HR manager, Marks and Spencer, Woodley

I stopped work, thought I couldn’t go on like this. My husband said, you have to face up to it. You have to take LW�DV�LW�FRPHV��%XW�PHQ�ÀQG�LW�KDUGHU�WKDQ�ZRPHQ��+H�IRXQG�LW�KDUG�WR�FRSH�ZLWK�P\�SUREOHP��%HFDXVH�,�ZDV�WKH�stronger person you see, and he couldn’t take that. Men don’t cope with that at all. He couldn’t accept that it was happening to me. Maureen, Woodley

He did look after me, because when I went like this, I couldn’t walk. But now, he’s got cancer, and it’s a case of he tries, but I get very annoyed. Because take the garden, I mean the grass is up here but I can’t go out and do it, and he always says, ‘Leave it! Leave it!’ He keeps getting these headaches and he can’t think. 6DQGUD��RIÀFH�ZRUNHU��:RRGOH\�

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Women Living With Dementia

Do you often have lunch outside?

We quite often go out. Yes. We go out.

We go in pubs.

And gardens.

The pubs are all nice round here.

Yes, the pub is the best place.

Welcoming.

Yes, well she hasn’t been thrown out of all them yet!

Laughter

I don’t think we’re too bad, do you? I think we’re quite well behaved. Quite well behaved.

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The Club, Woodley

Community, Home and Family

The next door neighbours were marvellous, they were probably our biggest ongoing support. They were an ex-police couple, retired, they were very public spirited and just very nice people. They would often help in a crisis. 0LQJ��VFULSW�ZULWHU�DQG�GDXJKWHU��/RQGRQ

It’s just me and Susie. She’s beautiful! She’s got a nice nature and she’s all black. If you’d told me years ago that I was going to get fond of a cat, I’d have told you to f... off! (laughs). The next door neighbours are looking after her. They’re having a whale of a time. It’s a young couple with a little boy, and he loves Susie. I’m very lucky actually in having nice people around. Audrey, York

Our faith is that we are all children of one God. Our community is very important for us, it supports us. We have two daughters and two sons, but they are all at work in London. We are the only ones living in Bradford, husband and wife. Athma, husband, Bradford

I’ve got nobody. Nobody. They’re in Hungerford, my son and daughter-in-law. But she’s got two children, they’re at school and her husband, he works around. It’s very hard. Sandra, Woodley

I’m lucky, I’ve got a brother and sister who both live in Woodley as well. Pat, Woodley

My daughter lives in Tenerife. She comes over every three weeks and she always phones. Maureen, Woodley

Often it’s the daughter-in-law who has the caring role, because she’s living in the house, she has the caring role for the parents. But she has no voice.

Ghazala, staff member Meri Yaadain, Bradford

Diagnosis

My mother had vascular dementia, not Alzheimer’s like me. I don’t think my mother ever realised, to be honest. I think I realised because it happened to me so suddenly, but with her, it was such a slow thing. I was looking after her when it happened to me. I can’t honestly remember what happened, because it happened so suddenly.I know my sister took me to the doctor, but I don’t know what happened. Pat, Woodley

I didn’t know how to describe the situation we were in. I couldn’t say, ‘My mother has dementia,’ because I didn’t know that for sure. I suspected it. But nobody had ever said it. Ming, London

I’ve worked in this area for years, but it’s hard to do it for your own family, it’s hard to do it for yourself. I’d known for about nine years that mum had the onset of dementia. What good did it do (knowing)? You can’t change it. One thing that was useful, I pushed to get them to the GP and get the diagnosis, but that was hard, and I know the system, but it was still hard, so that’s very telling. 1LFROD��GDXJKWHU�DQG�VRFLDO�ZRUNHU��<RUN

In 2005 she became sick. She changed and became angry. She was forgetting things. We consulted with the doctor who said she had depression. He treated her for that and then we joined this group, Meri Yaadain. They helped us and then we consulted another doctor who gave us the diagnosis of dementia. Athma, Bradford

It’s common for Asian women to be told it’s depression. You are depressed, of course you are, they say, your children have left home. So it takes longer for dementia to be noticed.

Riffat, teacher and daughter, Bradford

Caring: Riffat’s Story

My mum liked to see her clothes washed, ironed and hung up in the wardrobe. The things related to her needs KDG�WR�EH�GRQH�ÀUVW��,�ZRXOG�RUJDQLVH�PHGLFDO�DSSRLQWPHQWV��SULRULWLVLQJ�P\�SDUHQWV�ÀUVW��P\�RZQ�QHHGV�FRXOG�wait. I hadn’t seen the dentist for over three years, because I needed to arrange an appointment, then I QHHGHG�WR�ÀQG�VRPHRQH�WR�VLW�ZLWK�P\�SDUHQWV��EXW�,�FRXOG�QHYHU�SODQ�DQ\WKLQJ��EHFDXVH�DW�WKH�ODVW�PLQXWH�something would happen that needed immediate attention.

My mum particularly, if she thought she was going to be left with someone she didn’t know, she became anxious, she didn’t want to see them in the house. If we stepped out of the house, she held my hand. She had it in her head that if I left her anywhere, it was the beginning of me trying to put her in care; it was me abandoning her.

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My children were grown and I was a widow, and I could afford to give up my job to look after them. My other VLEOLQJV�GLG�KHOS�ZLWK�RXU�ÀQDQFLDO�QHHGV��:H�GHFLGHG�DV�D�IDPLO\�WKDW�WKLV�ZRXOG�EH�WKH�EHVW�FRXUVH�RI�DFWLRQ�and we put our resources together so that I could move in with my parents. Because I’d had my childhood in Pakistan, I was able to sit and read the paper to my dad and mum. My younger sister couldn’t communicate with my mum at all. You see, all the acquired languages were lost.

After we lost my mum and dad, my brother and I found the village they came from in India. We were able to follow the direction from the stories they told us. My mum could remember leaving on the train and the house EXUQLQJ��VKH�VDZ�LW�RQ�ÀUH�DV�WKH�WUDLQ�ZHQW�SDVW��:H�IROORZHG�WKH�WUDLQ�WUDFNV�DQG�ZRUNHG�RXW�ZKHUH�LW�ZDV��,W�ZDV�a memory that traumatized her when she had dementia, the sight of the house burning. To get her out of that, I ZRXOG�JHW�KHU�WR�WDON�DERXW�WKH�JRRG�H[SHULHQFHV�RI�KHU�FKLOGKRRG��VR�VKH�FRXOG�UHSODFH�WKH�GLIÀFXOW�WKLQJV�ZLWK�more pleasant things.

Caring

It’s often imposed on women. I nursed my father, I mean you don’t nurse your daddy, your wonderful daddy, do you? I nursed my mother. These were close family. And well, then, I nursed my younger sister, but that was a very tragic circumstance (she died of cancer when she was 19). I suppose looking back on it, there wasn’t any other SRRU�VRG�WR�ÀOO�WKH�UROH��6RUU\�DERXW�WKH«��,·P�D�ÀOOHU�LQQHU��D�VWDQG�LQ��IRU�ZKRHYHU·V�QHHGHG�DW�WKH�WLPH��Unfortunately it usually falls to the woman of the family to play more than one role. I wouldn’t say that they are forced into their roles, but it just happens, doesn’t it? Even though we don’t like it. Audrey, York

I was my husband’s carer, day and night. I was alone. I had to stay with him. I took him for respite once, because my sister died and my mother was very upset. I went to Pakistan, but after one and a half weeks they phoned me and said he misses you. He can’t sleep in the night. Will you please come back? So I told them, I’m coming back, tell him I’m coming. I went straight from the airport to the, what do you call it? Yes, the nursing home. I took him home. He was happy when he saw me, and he said, why did you leave me? He was upset about it, but after one week at home he was happy again. 4DPDU��ZLIH��%UDGIRUG

At work, I deal with the care assessments and the biggest thing I see there is just a massive sense of duty. The common theme there is, when we ask the question about how do you see your caring role, they say they do it because, ‘They’re my husband’, or ‘They’re my wife’. No choice in it. No wanting to. The difference is, probably for Dad’s generation, the division of chores and labour, and the way husbands and wives lived, so Mum had done the cooking, done the shopping, and been the social organiser as well. So he’s had a steep learning curve and he’s had to remember all the birthdays, send the cards. Nicola, York

I have to do all the jobs, shopping, washing. She’s had sixty-six years experience, but I only have experience of a few years. Athma, husband of Vidya, Bradford

He’s learning, but he’s slower. When he’s dusting, he doesn’t do it as well. Vidya, Bradford

Caring

Day and night I look after my husband. My son and daughter-in-law live here too. She looks after the children. I don’t get much of a break. It’s harder work to go on holiday, because he’s not interested in going outside. It’s hard when the children make a noise. )DULGD��ZLIH��IXOO�WLPH�FDUHU��%UDGIRUG

I realised how lucky I was to have had a mum who raised me well and who I loved, because there were at least three women in my support group who were having to cope with caring for somebody that they despised, because that person was never a good mum, but they’re now stuck with the duty of care of somebody that they don’t care for. Alison, daughter, living abroad

The carer is often the person who knows the person best, but the decision maker in the family often doesn’t want her as next of kin, so she’s not allowed to make decisions. If the daughter-in-law is the carer, nobody will notice she’s depressed. She’ll go to the doctor with physical symptoms, but she doesn’t want to say she’s depressed or not coping…

Mrs S wakes up at 5, aged 65, cooks for the day, cleans, she’s done by 7, then makes breakfasts for the grandkids, feeds them by 8.15. At 9 am her husband wakes, he has dementia. Her son goes off to work and her daughter-in-law does voluntary work, in this house she doesn’t see it as her responsibility to help.

We have had a case of a woman, sole carer of her mother-in-law, and she’s had a heart attack. Whenever I visit, she’s not getting any breaks, no physical respite. The mother-in-law is really beautifully looked after. As the social ZRUNHU��,�FDQ�VHH�P\�FOLHQW�LV�ÀQH��EXW�,·P�PRUH�ZRUULHG�DERXW�WKH�FDUHU��ZKR�LV�PRUH�LOO�WKDQ�WKH�SHUVRQ�ZLWK�dementia. The carer is unwell and drained, she’s killing herself. Abida, staff member Meri Yaadain, Bradford

Doctors

Maureen Dr Z and her crowd are very good. She runs the dementia team.Pat You can talk to her. Helen Does it make a difference having a female doctor?Pat It does to me.Margie Men can be a bit, you know. Male doctors don’t speak about it in the same way as us. They get muddled up.Pat I think female doctors understand the basics of life more, because they’re quite often mothers or

housewives as well as doctors. I’ve never really dealt with a male doctor, with this, so I don’t know. Margie Females are a bit more forgiving. Pat I think for me, the basics of life, of having dementia make it easier for me to speak to a female doctor

and maybe it’s easier for a man to speak to a male doctor. Chris They’re all right. Doesn’t bother me. I mean a doctor’s a doctor.Pat I think it’s more important that doctors don’t change. You have to explain it all again.Pauline Sometimes the medical people talk to your family. They don’t talk to you. The Club, Woodley

The thing we do really badly is with GPs. Everybody goes to their GP, especially as they’re getting older, with health problems, and I think we’re shocking at identifying people with dementia in the early stages, and we’re shocking at doing anything about it. The other thing, I know my Dad says this, is the loss of contact. They’ve had a CPN but she’s pulling out now. In social services we’re very bad at letting people through the front door. There’s so many budget cuts that people have to hit crisis point before we can do anything for them.

Nicola, York

Hospital

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Some aspects of dementia are not dealt with well. In fact, doctors and nurses are generally not trained well to deal with dementia or any psychiatric issues. There is a move away from doctors having a paternalistic role but with dementia, if it’s about capacity, the doctor might slip back into that role. I’d say that dementia, and old age in general is dealt with terribly in hospitals. Full stop. It will have to get better. Older people in hospital are overlooked all the time. They don’t get a fraction of the care younger people get. Maybe because they are stoical about their health. They’ve been brought up to learn to live with stuff. They might have multiple health issues and they’ve just got used to being in hospital, so they don’t question the doctor. Families too, they struggle to make decisions. It’s hard for a family to make a non-biased decision. /6��FDUH�DVVLVWDQW�DQG�PHGLFDO�VWXGHQW��1HZFDVWOH

I was a nurse. It’s very odd to be a patient. Not frightfully enjoyable really. I mean, who does want to be on the receiving end of anything? Audrey, York

Change

Circumstances are dictating major changes. The older generation expect their children will look after them. But for my children, they are not here and I wouldn’t want to move to where my children are, because I’m here, my friends are here. Riffat, Bradford

Audrey Where would I like to go? Well I could go to a stately home anytime! (Laughs) But it won’t happen! They’re talking about somewhere off Tadcaster. It’s not a place like Joan was in.

Emily No, it’s not a nursing home, it’s for rehab.

Audrey I’m going into rehab! (Laughs) And not because of booze!

Emily But that’s temporary, and then either you’ll go home or go somewhere near your daughter.

Audrey I can’t go home, can I? I haven’t got a home to go to, the children are going to sell it. They’re selling up. I mean I ZDQW�WKHP�WR��,W·V�GHÀQLWHO\�KDSSHQLQJ��WKH�KRXVH�LV�XS�IRU�VDOH��,�KDYHQ·W�VHHQ�WKH�ERDUGV��QRW�\HW��EXW�LW·V�RQ�WKH�cards, and both of the boys did say, ‘Mother are you happy about that?’ And I said, ‘I don’t think darling, the word happy comes into it, it’s not happy.’

Audrey, York

If children are going to stay to look after their parents, how will they work and get money? So, if older people have care needs, they will have to go to a care home. Athma, Bradford

Some who are in their own home, with family, they are actually being neglected, because the families are busier or because of social stigma, but where is the culturally appropriate residential care? What are the images on the walls? What food is there? Ghazala, Bradford

I felt guilty about going behind her back to arrange the care place, because I knew it’s the last thing she would have wanted had she been herself, but by the time it got to crisis, I couldn’t feel guilty anymore because we were both going under. Ming, London

Professional Carers

You go into a home and you notice instantly that 90% of the residents are female, and so are the carers. I think that’s another reason why dementia care, and care in general, is not prioritised, because it’s become a thing that women do, and women are the recipients of, and therefore men, who tend to be policy makers, don’t make it a priority, it’s not important to them. They would refute that, I’m sure, but I believe that until there are enough women in top policy-making roles, it’s not going to change. Ming, London

A huge proportion of carers are women. In our company we’ve only got one man, we can never give them enough work. Women at home don’t want a man and some men don’t want a man either. Are female or male carers more compassionate? It’s not necessarily about that, if you get someone who really cares. I mean you can teach someone to deliver care, but you can’t teach them to be compassionate. NW, Home Care Agency Manager, Yorkshire

It’s a nightmare. We can’t get carers and we can’t keep care staff. The most important thing for people with dementia is that they need consistent carers but we don’t pay enough, so people move on. If we don’t value it, we pay the minimum wage, and it’s a dreadful job out there in the community. I’ve done it in care homes and it’s not easy, but you’ve got more protection and support, whereas out there in the community it’s a hard slog.

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Professional Carers

At one place I worked, a psychiatric hospital, care assistants had responsibility and there were ways they could progress. There were training opportunities. But I also worked in some old age care homes where there were a lot of older, female care assistants and where the work was physically and emotionally demanding, but there were no opportunities for training or development. It makes them worse carers. Maybe it’s a difference between psychiatric care, versus community residential care.

There were a lot more female care assistants than male and the women tended to be either young, so students, or people who were going to go on and do something else, or older women who’d had their families. I think it’s the shift SDWWHUQV�WKDW�PDNH�LW�GLIÀFXOW�IRU�ZRPHQ�ZLWK�FKLOGUHQ��0RVW�RI�WKH�\RXQJHU�ZRPHQ��ZKHQ�,�ZDV�GRLQJ�LW��GLGQ·W�LQWHQG�WR�VWD\�LQ�FDUH�MREV��0LQG�\RX��,·YH�EHHQ�JRLQJ�EDFN�LQWR�WKRVH�VHWWLQJV�IRU�IRXU�RU�ÀYH�\HDUV�DQG�VRPH�RI�WKHP�DUH�VWLOO�WKHUH��still saying they’re going to leave. /6��1HZFDVWOH

It’s the money. It’s not a career that’s appealing to people because of the money, it’s a job people do for a while on the way to do something else, but if they can earn the same money in the local supermarket, why would they stay?

Nicola, York

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The council pays from £9 per hour for something that actually costs over £15 per hour. I’d like to pay the Living Wage, but it would cost me nearer £20 per hour and I’m not funded enough. In some companies, carers are booked with appointments so close together that they might be booked to do three in an hour when each visit is supposed to be half an hour, plus travel time. Why are these such well known secrets? As an employee, if I complain, I won’t get any work. It gets overlooked because women who are carers on low income are invisible, old people are invisible and people with dementia are invisible. NW, Yorkshire

Women’s Voices

It would be better if more women spoke up about it, but I still think it’s something that people shut away.

Women wear their hearts on their sleeves more.

When we have the men here, they don’t talk about it. They don’t talk about their dementia. If we start talking about it, they just take themselves off into the garden.

If it’s a famous man, then they say, ‘it’s a terrible loss’.

Yes, they don’t say, he was a milkman and it was a terrible loss. It’s a class thing too. But there’s a sense that women just get on with it.

I tend to think that women are the underdogs, because men have had these high-class jobs.

I had a high-class job, I worked in the bank for twenty years, what are you talking about?

No, what she’s saying is that it’s assumed that the men will be good at speaking.

But you know yourself, most probably, if there’s anything going on, they won’t come up and tell you, they’ll go and tell your husband.

…people need to recognise it is an illness, rather than just being a batty old aunty or whatever.

The Club, Woodley

Last Word

Pat I felt that I was just going to be up front with everybody. I told my friends, once I was diagnosed. I mean they must have known something was wrong. I told friends and family. It made it easier for me, because I was afraid I was going to say something stupid. To me, I think, you wouldn’t be frightened to tell people you had cancer. I mean I didn’t tell everybody, I didn’t put a note on the door, ‘Here lives Pat, she has Alzheimer’s.

Laughter

Maureen Oh yes, as a group we all laugh at each other.

Pat We’re not laughing at you, but with you.

Margie Yes, we’re laughing with each other.

Maureen We’ve got to laugh, you’ve got to laugh, haven’t you?

Pat People have just got to understand, that getting a diagnosis isn’t the end of your life.

Sue And Pat’s been saying that as long as I’ve known her.

Pat See, I’m repeating myself again. (Laughter).

The Club, Woodley

women's experiences of dementia

Documents

group of women

role of women

audrey joseph rowntree

introduction emily

emily theyre

things youve

choices youve

care assitant