Dementia: “I wasn’t offered help – I was castigated.

James McKillop’s long career in the civil service came to an abrupt and unpleasant end after he developed the symptoms of early stage dementia. Here he tells his story, and calls for employers to show workers with dementia compassion and fairness, not the door.


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I joined the Civil Service in 1959. I went where I was sent, and after a few years in England, found myself in Glasgow in 1971. Where I worked, females outnumbered the males, by at least ten to one. It was a great place for a single man to meet a possible wife, and so I did; marrying in 1973. Four children followed. Life went on, and then it changed. I was taking longer and longer to do my work. It wasn’t rocket science or brain surgery, just clerical work. The work was routine and you did the same work on the first of January, as you did a year later on the 31 December. And the same again the next year.

I ran a small team and I checked their work. It had to be correct when it left me otherwise the customer would suffer another day’s delay. I was doing my work correctly but frequently had to consult my work’s manual to get it right. This meant staying behind unpaid, to keep up with my workload. I did not mind this, as being correct was so important to me.

My supervisor noticed I was not coping but instead of being asked if all was well and being helped, I was castigated. If I had had a drug or alcohol problem, all sorts of help and counselling were available, but there was nothing for an employee, who had given his all since leaving school. And now at age 55, was now experiencing some sort of problem. There was no mention of being referred to anyone, who could look into the situation. Note, I did not have a diagnosis of dementia at that time. But I was struggling.

The pressure mounted on me and took toll on my health with absences for high blood pressure. I ended up off for some months. The day I went back I had such a harrowing interview with my supervisor I had to go to the work’s nurse. My blood pressure was so high she said I would die if it stayed at that level. She sent me home in a taxi, and I never worked another day there. I took a retirement package, before I was pushed out or died from the high blood pressure. What a way to end your lifelong career! Normally at retirement there is a ‘do’, presents and speeches. No one in my group knew I had retired, until a month later and that was by accident. If I had been offered a job at the level below me, my work would have been checked, with no disadvantage to the customer.

At work I was in charge of people and one time I noticed a very good worker, a widow, was not coping. I spoke to her gently, pointing out she was not up to her usual standard, and was there anything I could help with. She had problems with a lodger that were affecting her sleep and her finances. She refused to show him the door, as she could not do that to somebody’s son. She took my advice to buy him a one way ticket back to the islands. Her work rate immediately improved and she looked and sounded better. I looked after my staff – but I wasn’t looked after by my employer when it was me who needed help.

Some years later I was at Alzheimer’s Scotland, making a video for them with ten others, who had been diagnosed with some form of dementia. During a break in filming we got chatting, and found every single one of us, had left work under a cloud, as our performance had slipped. We were got rid of. Employers need to be aware that dementia is a disability, and people should be treated under any Disability or Human Rights acts around. Sadly, there are people reading this article that will go on to develop dementia. Make sure your rights are in place before that happens.


This article is taken from James’ presentation today to a Dementia and the Workplace conference for trade union reps, organised by Age Scotland, STUC and Alzheimer Scotland.

Living well with Dementia: diagnosis is key

Today kicks off Dementia Awareness Week in Scotland. Richard Baker, Team Leader of our Early Stage Dementia Project, talks tackling the stigma and how early diagnosis is key to living well with dementia.


This week Age Scotland will be joining Alzheimer Scotland and other organisations working for better support for people with dementia to promote the need for better support and early diagnosis.

This is a key concern for Age Scotland through the work of our Early Stage Dementia Project, supported by the Life Changes Trust. Early diagnosis for someone with dementia can make a huge difference to their ability to live well with the condition. The Scottish Government has made dementia a national priority, and as part of this has introduced a commitment to provide one year’s support for everybody who has been diagnosed with dementia for a year after their diagnosis. This support is provided by link workers who help people with dementia understand the illness, manage symptoms, maintain their connections with their local community and help them make plans for their future.

However, while there is a huge amount of work going on to raise dementia awareness and tackle stigma around the illness, there is still a huge amount to do. Depending on the measure used, either a third or a half of people who have dementia in Scotland have not yet received a diagnosis. A UK survey by the Alzheimer Society found that more than half of people seeking a diagnosis for dementia have delayed going to their GP by at least a year and nearly two-thirds of people fear a diagnosis would mean that their life is over.

But people can and do live well with dementia, and support in the early stages is crucial to ensuring this can happen. That is why it is so important to tackle myths and stigma around dementia and make more people aware of the benefits of early diagnosis. At Age Scotland we meet people with dementia who are still contributing to their communities and are the leading voices campaigning for improved dementia services. Their example shows that if people take early action if they are worried about their memory or struggling with other activities, they can still have a rewarding life even if they do receive a dementia diagnosis. Dementia Awareness Week is a great opportunity to highlight this message, and it is vital the work to make all our communities dementia friendly and dementia aware continues all year round.

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Age Scotland’s Early Stage Dementia Team

To find out more about Age Scotland’s work around Early Stage Dementia visit our website or contact Richard Baker at Richard.Baker@agescotland.org.uk

 

The Difference Power of Attorney makes: Shirley’s story

Guest Blogger Shirley Gill’s parents were diagnosed with Dementia within a year of each other. Her father had Power of Attorney set up but her mother did not. In her guest blog, she shares with us the vastly different experiences she had when trying to manage her parent’s financial matters, and the difference that having Power of Attorney set up made.


Initially my parents had no Will or Power of Attorney in place. My Mum saw herself as forever youthful, and Dad had always allowed her to attend to all financial matters. After being reluctant to attend her GP, Mum was late in receiving a diagnosis of Frontotemporal Dementia at the age of 70. She was admitted to hospital then moved into nursing home care. Mum lacked the capacity to make decisions about her finances and welfare, but as there was no Power of Attorney set up, I was advised that to be able to make any decisions on her behalf, I would need to apply for guardianship.

Mum and I met with solicitors to assess her views but she didn’t understand any of it. The solicitor then had to write to the GP and Consultant about her diagnosis and capacity. The solicitors also then had to write to every close relative of Mum’s, to find out if anyone had an objection to me being her guardian, despite the fact that some of them had had no recent contact with Mum. This process took months and in the interim I had to apply for Access to Funds at Office of Public Guardian (OPG) so that I could deal with Mum’s financial matters. For this I had to detail her every requirement and it was very stressful and time-consuming.

During this time, Dad agreed to see a solicitor to arrange a Will and Power of Attorney. Dad was visited in his own home and the whole process was straight-forward and not costly. The following year he was diagnosed with Vascular Dementia. It was a comfort to know that with the Power of Attorney set up, we had everything in place so that I could look after his finances and welfare when he was no longer able.

Several lawyer’s letters later, Guardianship was eventually in place for Mum, having cost a total of £6000. I needed to have this in order to make any decisions about Mum’s care or deal with her finances. Even now the process is complete, I have to send annual accounts to OPG which is very time consuming.

What I have learned from this experience is that it’s a good idea to arrange a Will and Power of Attorney in as much advance as you can, you are never too young. I have now arranged a Will and for my daughter to be my Power of Attorney. I would urge people to consider Power of Attorney to protect their families and reduce any unnecessary stress in the event of illness.

For more information on Power of Attorney visit the Age Scotland website, or to speak to someone about your individual situation call Silver Line Scotland on 0800 4 70 80 90.

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Mental Health and Older People

Today is World Mental Health Day – a day the world celebrates mental health education, awareness and advocacy. Guest blogger Karyn Davie, Age Scotland’s Health & Benefits Project Worker, shares her findings from recent group discussions on mental health and older people, and the barriers to people seeking help.


Earlier this year I met with some of Age Scotland’s member groups to talk about mental health and wellbeing; access to treatments, and their own personal experiences.

It was clear that self-stigma remains a strong barrier to people in older age seeking help to mental health issues, with individuals being concerned about being judged by others.

‘My neighbours didn’t know why I was in hospital- it would be different if it was a heart attack or something, they would stop me in the street and ask if I was ok- but they would look strange and think I was a ‘loony’ who had been in a ‘loony ward’. I couldn’t cope with that’.Man_Garden_006

Another common theme that was discussed by the groups was loss of social networks and the effect this has on self-esteem, and sense of social standing. One gentleman told me: “I have been to four funerals already this year- that’s my social life! I worry there’ll be no one left to come to mine”.

Other Common Losses discussed were:

  • The impact of retirement, and the loss of structure to the day
  • Moving home; close friends or family moving away;
  • Living on reduced income
  • Not being able to take part in activities enjoyed for many years because of difficulties getting there, health problems or hearing/sight problems that affect them
  • Sense of vulnerability due to sudden health changes i.e. stroke or heart attack

All of these losses were discussed as having a significant impact on the person’s self-esteem, with many people advising that they made them feel isolated and lonely.

While visiting the Mood Project in West Lothian, the Men’s Group were very honest and open about issues for them. They made the following observations:

  • Men don’t generally pick up leaflets to seek advice unless; directly given to them by a health professional; forced to by a partner; or it says ‘free’ on the cover!
  • Men tend to talk about ‘problems’ rather than emotions.
  • They would rather be actively ‘doing things’ rather than talking i.e. walking groups, outings, men’s sheds.
  • Mental health problems affect their sense of masculinity- they should be the strong one; the protector and provider and this is challenged by feelings of being ‘weak’.

Many people I spoke to that described physical symptoms such as heart palpitations and headaches that don’t go away were unaware that the way they felt could be due to their mental health. They also preferred to use terms like ‘funny turns’ rather than panic attacks.

Much of the terminology used in modern day mental health services such as ‘mental resilience’ or ‘coping strategies’ was unrecognised, and had a very negative impact. There was also very little awareness or understanding of treatment options such as psychological therapies, and social prescriptions. Both of these factors presents a real barrier to people seeking help, as the fear remains that it will lead to admission to a psychiatric hospital.

In general written resources are not age friendly, often using bright fonts with modern slang and terminology or advocating use of mobile apps or computer programmes which can isolate older audiences. Information is also not always presented in a way that takes into account differing needs due to sensory and cognitive functions.

We also found that concerned friends and family struggled to find resources about ‘how to have that difficult conversation’ and how they could help.

With the learnings from these visits, I am currently developing information resources for people who are concerned about their mental health, with the aim to make it more accessible and age appropriate.

For more information on Mental Health visit:

Or call Silver Line Scotland on 0800 4 70 80 90

 

Time for reshaping care to shape up

In the light of a report, published today, on Government plans to shift older people’s health and social care more from hospitals into communities, Age Scotland Chief Executive Brian Sloan addresses the challenges and likely solutions.

Photographer: Claudia Janke

Our ageing population is a consequence of success. We have a national ambition that people should lead longer, healthier lives, so we should first and foremost celebrate that we are achieving this. Many people still have fulfilling, rewarding and healthy lives into their 70s, 80s and beyond.

It’s also a myth that most older people need expensive care; in fact, the reverse is true: most older people do not. Only 9 per cent of over-65s are in long-term residential care or receive formal care at home; even among over-85s, this figure rises to just over a third (although many more people receive informal support from relatives).

Nonetheless, our changing demographics will have profound consequences. The ways in which our society pays for retirement, and the houses in which older people live, will have to adapt. Similarly, we cannot assume that traditional models of planning and delivering health and social care will continue to work. That’s what the Reshaping Care for Older People programme is supposed to be about. It aims to shift the balance of care, with more support delivered in homes and in communities than in hospitals. If we do this, we will also make it more likely that older people will remain physically active and socially connected, and achieve better health outcomes. We will also save public money, as resources can be diverted from expensive and reactive hospital treatment to more proactive and cost-effective care within communities.

The ambition is easy to state, but complex to achieve. NHS boards, local authorities and health and social care partnerships need to develop and implement change, at the same time as meeting current demands. It is always challenging to make direct links between preventative support and savings, many of which will not be seen until much later. The health service and councils currently work to different aims and standards; greater integration should help here, but there still needs to be a profound shift in culture, and a relentless focus on older people’s rights and better outcomes over the mechanics of getting things done.

Today, the public scrutiny body Audit Scotland has published a report which shows how much more needs to be achieved.

  • Because real change will involve many different people and organisations, there needs to be a firm commitment and strong leadership, both nationally and locally, to drive progress. The NHS and local councils need to develop strategic plans which promote consistency and reduce unnecessary variation.
  • We need to be more open to innovative and collaborative solutions: GPs should be more open to social prescribing or community referrals; care managers and care providers need to think about creative ways to address and manage the social effects of long-term health conditions; there should be an established process to decide whether someone really needs to be admitted to hospital or if community or home-based support can be arranged.
  • The report also notes that, although there are examples of good practice in linking up care and treatment towards more preventative and anticipatory approaches, there is no nationwide monitoring system to track progress or help to determine what is working and could be scaled-up and extended. The Scottish Government has invested £300 million over four years through the Change Fund to help push this, which has made different organisations develop some joint objectives, but investment decisions seem unsystematic and disconnected and projects are often not evidence-based. A central focus on the outcomes achieved locally would be a vital step, especially as joint strategic commissioning plans are being developed locally over the next year.

The reshaping care programme is intended to last until 2021, so there is time to reflect on the work, much of it good, which has already been done. But a protracted, piecemeal approach won’t work for such a mammoth change, on which so many of the older people of tomorrow will depend.

STIs don’t care about greying hair and a few wrinkles

Guest Blogger Pat  Craig investigates the rise in Sexually Transmitted Infections in the over 50s.

Woman at PartyDid you wear flares, a bandana, go- go white boots or miniskirts? If so, you were probably witness to one of the most significant changes ever.

In 1961, the Pill became available on the NHS, and changed our sexual behaviour radically. Suddenly we could endorse ‘free love’, freed of the crippling anxiety over unplanned  parenthood which surrounded more traditional methods of contraception.

However, there was a price to be paid and it’s with us now.

Sexually Transmitted Infections (STIs) in the 50+s have more than doubled in the last 10 years.

Almost 13,000 men and women over the age of 45 were diagnosed with an STI in 2009, double the numbers in 2000.  Chlamydia has risen by 95% in 9 years. Calls to the Family Planning Association (FPA) helpline, from older people worried about their sexual behaviour and STIs, have shot up by 30% in just three years.

Over 50s, single again, are dating using websites, dating nights and holidays as a chance to have sex and relationships. Add to this Viagra, which has extended the active sex life of many older men, and you have a ticking time bomb.

Many over 50s, relieved that contraception is no longer an issue, forget about the need for safe sex and condoms. If they were in a long-term relationship they may not have thought about them for years, far less bought them.

While the younger generation tend to think of STIs dispassionately, older people are more likely to feel embarrassed and fearful, or remembering the stigma of Venereal Disease (VD) are less likely to seek help or information. Add to this that most sexual health campaigns and clinics are aimed at younger people and you can understand their reluctance to seek advice.

The FPA launched the country’s first ever campaign for the over 50s a year ago. They have also made available a free booklet: ‘People over 50: Relationships and sexual health’ which is available on line, on the helpline number or at any of their centres.

The FPA endorses the positive and fulfilling sexuality of the over 50s but also wants to get the message over that STIs don’t care about greying hair and a few wrinkles. If you are having unprotected sex an STI will find you attractive whatever your age.

So, if you are over 50 having or thinking about having sex with a new or different partner(s) make sure you have a sexual health check first.

The telephone number of your local clinic is in phone book

What do you think about the care system?

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The Scottish Older People’s Assembly (SOPA) is taking place in Edinburgh on Friday 2 November 2012 at the Edinburgh International Conference Centre (EICC). SOPA is a themed event, and this year the day’s agenda is centred around care and caring.

Age Scotland is on the Scottish Older People’s Assembly Steering Group, and we are asking older people to give us comments and statements about their experience of care and caring, including preventative care that helps older people to remain active and connected to family and community.

As well as the challenges and difficulties faced, we are particularly keen to hear of innovative projects and what has worked well for carers.

Your comments will help shape the Assembly programme and inform Scottish Ministers, and the issues will be reflected in the Assembly report that will go to the Scottish Government and other organisations involved with SOPA.

Comments can be sent to acfaa@edinburgh.gov.uk or by post to Glenda Watt, The City of Edinburgh Council, Business Centre 1/7, Waverley Court, 4 East Market Street, Edinburgh, EH8 8BG.

Alternatively, you can leave comments on this blog post and we will be happy to take them into account. Please say if you are responding as an individual or representing a group and we can help shape SOPA’s programme for November based on your feedback. Thank you!