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?

Lady with carer

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!

The Scottish Older People’s Assembly 2012

SOPA Logo

Now in its fourth year, the details of the Scottish Older People’s Assembly (SOPA) have been confirmed for 2012.  The event will take place on on Friday 2 November 2012 at the Edinburgh International Conference Centre (EICC).

The Scottish Older People’s Assembly is an annual event themed around topics of particular relevance to older people. The theme for this year’s Assembly is the older person’s experience of care, which could be in the person’s own home, a centre, hospital or care home, and the challenges, good practice examples and the importance of compassionate care.

The 2012 Assembly will also highlight issues around active ageing, preventative care that encourages older people to remain socially connected and the contribution older people themselves make in caring for others.

Nicola Sturgeon MSP (Deputy First Minister and Cabinet Secretary for Health, Wellbeing and Cities Strategy) will be the keynote speaker at SOPA 2012 so this is an ideal opportunity to put the questions that matter to you to the Minister.

Embracing technology

This year’s SOPA plans to use video conferencing to build on the success of last year’s event. Video conferencing will be used with groups from local communities across Scotland, and will include presentations from older people.

SOPA 2012 will be streamed live on the day and will also be available as a webcast to view following the event. If you cannot be in Edinburgh on the day, why not make arrangements with friends or your local group to watch the Assembly live online? You can also follow the event on Twitter.

The details

The Assembly will run from 10.30am to 4.00pm with registration from 9.30am on Friday 2 November 2012. Lunch and refreshments will be provided. This is a free event but unfortunately transport and accommodation costs cannot be covered for those attending.

The Edinburgh International Conference Centre is fully accessible and close to local bus routes and train stations. See the EICC on Google Maps.

Want to attend?

The Scottish Older People’s Assembly Steering Group will arrange for invitations to be sent to older people’s groups across Scotland through their network arrangements.

If you are not part of a group but would like to attend, you can register interest by email to acfaa@edinburgh.gov.uk or by calling 0131 469 3806 / 3764. As SOPA is likely to be very popular, the event could be oversubscribed. Places will be confirmed in October 2012.

Planting the seeds of better social care

Age Scotland’s Communication and Campaigns Officer, Doug Anthoney, blogs about the recent social care announcements by the UK Government.

Man gardening

Social care provisions in England could lean towards hobbies and leisure activities, like gardening.

Last week Social Care Minister Paul Burstow announced that a Government shake of social care would include help to promote leisure activities and friendships among older people.  “Simply put, it is a vision for social work that is no longer based on one that only reacts in crises,” said Burstow. “Instead we want social workers to look to people’s talents, their gifts, their goals.”

Does this herald a radical new world in which social workers help older people to release their inner gardener, or chauffeur them to a blues jam session with their mates? Not quite yet.  For a start this was Westminster, not Holyrood, and so the review applies to England and not Scotland.

And, of course, words don’t necessarily translate into meaningful action.  However Burstow’s vision of social care being about what a person would like to be supported to do is, and of meeting their social needs being a primary aim, is to be applauded.

So is Scotland ahead or lagging behind here?  The Self Directed Support Bill currently progressing through the Scottish Parliament holds out the prospect of older people being able to take control of the budget for any social care they receive.

Age Scotland’s Senior Policy and Parliamentary Officer, Callum Chomczuk, gave evidence to the Parliament this week on the bill, and said:

“The Bill builds on existing provision for people to make use of direct payments for social care, however it includes new features including a right to advocacy.  This is crucial, as a knowledgeable and impartial advocate can open your eyes to the widest range of options to improving your health and wellbeing, from gardening classes to a short break with a friend.”

This all sounds great for those receiving care at home, but what about older people in residential care? No matter how good support is for people in their communities, it’s inevitable that many of us at some point will need to go into a care home.

Subjected to a drip feed of scare stories in the media, there’s understandably a high level of public anxiety that our fate is to be sat twelve hours a day in the same chair, staring blankly at the Jeremy Kyle Show while a callous care assistant feeds us dog biscuits.

While there are poorly performing care homes out there, they are under more pressure than ever before thanks to the recent introduction of annual unannounced inspections.  And with more than three in every four rated good, very good or excellent on quality of care and support it’s clear that the majority are providing a decent service.

The best, however, look for opportunities to offer something special to residents, to spark their interest and kindle their joy in life.

On 3rd July this year these care homes will be taking part in Go for Gold, a care home ‘Olympics’ involving games, walking and dance challenges for residents to mark the run up to the World Congress on Active Ageing in Glasgow on 13th to 17th August.  They will also taking advantage of opportunities including Luminate, Scotland’s first national festival celebrating arts, creativity and ageing in October, to make the care home experience rewarding and life affirming for each resident.

Do you think that the Minister’s ideas for social care should include the provision of leisure and social activities? Let us know in the comments – we’d be interested to hear your thoughts.

Consultation on the integration of health and social care in Scotland

Man getting blood pressure checked

The Scottish Government has opened its consultation on legislation to integrate health and social care services. This will run till 31st July.

The Government’s plan on health and social care integration legislation will not include the creation of a new body that merges NHS and local authority social care services. Instead, the main characteristics of new system will be:

  • Reform of the current Community Health Partnerships, making them the joint responsibility of the NHS and councils, as well as accountable to the government and local authority leaders.
  • NHS Boards and local authorities to be required to produce integrated budgets for older people’s services to bring an end to the ‘cost-shunting’ that currently exists.
  • A smaller proportion of resources, in terms of money and staff, to be directed towards institutional care, with more resources invested in community provision.

You can find full information about the consultation on the Scottish Government’s website.

Age Scotland will be holding two health and social care panel events with member groups and supporters over the summer, the aim of which is to hear views from older people on the proposed bill and to discuss if anything is missing from the proposals. You are warmly invited to attend:

When: 24th July
Time:11:00-12:00
Where: Broomlands & Bourtreehill Age Concern, Irvine, Ayrshire

When: 26th July
Time: TBC
Where: Dumfries, venue TBC

As more details become available we will update this blog and our website. If you would like to attend one of the panels, please email Senior Policy and Parliamentary Officer Callum Chomczuk or call him on 0845 521 2457.

As well as these events, we are keen to hear your views about health and social care services; be it the cost of residential accommodation, the lack of public transport to get you to appointments or simply a poor quality service. Your views as an older service user will help us to shape our consultation response, so if you have an opinion please do tell us.

If you are interested in sharing your views email Senior Policy and Parliamentary Officer Callum Chomczuk or call him on 0845 521 2457. You can also leave a comment on this post – we’d be very interested to hear your thoughts.