Working Women and Dementia

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It is International Women’s Day and therefore pertinent to recognise the enormous contribution that women make to the lives of people living with dementia. At the UK Dementia Congress last year, Worcester University presented the research paper ‘Women and Dementia’ which demonstrated that ‘Dementia has not only become the leading cause of death among British women, but they are also more likely to end up as carers of those with dementia than men’.

As many of our followers know, one of the main aims of Pathways Through Dementia is to reach out to and support sandwich generation carers – these are mainly women who are termed ‘sandwich generation’ because they are sandwiched between roles, maybe raising a family and caring for relatives with dementia, or working and caring for relatives with dementia. This juggling act can become very stressful – my own mother gave up work in order to care for and move my grandmother nearer to us because my grandfather could not cope with his wife’s Alzheimer’s disease. Read More

Care costs cap

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Very interesting You&Yours on Radio Four last week about the Care Act and how it will affect people. A caller had been trying for weeks to ascertain from the local authority when and how he ought to be recording the care costs his relative was incurring so that they knew when they had reached the £72,000 ‘cap’, ie the point at which the government starts to pay for care. Weeks of banging his head against a brick wall with the health professionals was resolved in two seconds when the expert on the panel pointed out that this care cap does not come in until April 2016. Additionally they highlighted the need for the implementation of the Care Act to be properly funded! Another helpful and pertinent programme from Radio Four.

Upcoming talks and events

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After a quiet summer everything is starting up again for the Autumn: I am speaking to Westminster Memory Service next week and Admiral Nurses next month (all our talks are advertised on our free App which you can find in your App Store or on iTunes searching for Dementia SOS). Next week I am also attending a seminar with Harriet Harman who is going to be talking about how government policies can support women who are working and looking after a relative with memory loss -the ‘sandwich generation’ Pathways Through Dementia is also keen to help.

We have been lucky enough to attract the support of Stone Rowe Brewer solicitors who sponsor our App, Greenacres Nursery in Hampton Hill who have chosen us as their charity of the year, Mark Green of St James’ Place Wealth Management who is sponsoring our Newsletter, and Nigel Bunner who is a local musician with personal experience of dementia who is raising money for us at his gig in Kinston Upon Thames on October 11th:

Thank you for visiting this Blog, I hope that it will continue to be useful for people.


Dementia and Dignitas

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The Daily Mail reports today that a man who has dementia has decided to go to Dignitas. The assisted dying debate is frought with ethical dilemmas and moral difficulties but it is important to focus closely on the messages that organisations such as Dignity in Dying are trying to convey: the Mail article mentions the possibility that this man’s decision will exert pressure on other people with dementia to kill themselves, which I would challenge. Any assisted dying laws would be introduced for people who have the mental capacity to make a decision to die, and are living with a condition so depressing they feel they have no quality of life any more. This is not necessarily people who are disabled, or old, or having memory problems, it is people living under what they consider to be intolerable circumstances. Once we start mentioning putting pressure on people, implications for disabled people etc we are drawing in a group of people who in fact stand outside the debate. But the more we do the more nervous they will become that they ARE a part of the debate. We celebrate disability and old age in an evolved manner nowadays, let’s not undermine that by extending a discussion about assisted dying to those who are living happily with their disability or age.

Dementia Friendly Communities

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Today David Cameron made a huge commitment to people with dementia and their carers, promising to make the UK a world leader in relation to dementia awareness, research and care. Jeremy Hughes, CEO of the Alzheimer’s Society, naturally welcomed this statement and emphasised the need to ensure that people ‘live well with dementia’. It’s a good day for the world of dementia.

The Alzheimer’s Society has lots more information on their website:

Confidentiality and the diagnosis of dementia

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You&Yours are keeping me busy today! Another article discussed the issue of people with dementia and patient confidentiality. Again this question demonstrates the unique experience of dementia – some people argued that GPs should communicate the diagnosis to wider family members due to the fact that people cannot always recall the details of their diagnosis or any advice they had been giving during an appointment. Others argued that there were ways around this – inviting a relative to the appointment for example.But not everyone will want their family to know the formal diagnosis and not everyone will have someone they trust to take to their surgery.

I have not given this area much thought as I was not aware it was up for debate but I can see both sides of the story – legally our GP cannot disclose our medical information to third parties however this is not necessarily in the best interests of the person if they have memory problems. If the patient has drawn up a Lasting Power of Attorney for Health and Welfare this means that someone has been nominated to make care decisions on behalf of the patient but it isn’t much use if the attorney is not aware that it’s time to start using it. Further thoughts welcome….

Driving – whose responsibility?

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On March 31st 2011 I attended a seminar on Dementia and Big Society run by the Art and Humanities Research Council and the Nuffield Council on Bio-Ethics during which the debate turned, for reasons that escape me now, to the topic of Driving. I was pleased that this was raised as it is an area that causes great difficulties for people with dementia and those that are concerned about their driving abilities. From the outset we established that there is no blanket ban on people with dementia driving (true, however insurance was not mentioned and people will probably find that this comes into play if they are diagnosed with ANY illness which may affect their driving – epilepsy, fainting fits etc. Fail to inform your insurance company of a medical development and you might not be insured in the aftermath of a traffic accident if the cause of it could be attributed to that medical issue). Of course the early diagnosis lobby will need to be clear that early diagnosis means early referral to DVLA but this is not necessarily a bad thing. GPs may refer people upon diagnosis but in my experience GPS are not keen to do this as it will probably annoy their patient with dementia.

The real grey area is the one in which people undoubtedly have a memory problem (which can affect response times – and there is only one way to test your response times in the course of a normal car journey…) and their driving is becoming a ‘worry’. What are the options if they refuse to accept that they may no longer be a safe on the roads? It’s a bit like the issue of people with dementia drinking too much – if someone has access to a) money and b) an off license there is not an awful lot family can do to prevent someone drinking the days away, especially if they live alone, if that is what they want to do. So, if someone has access to car keys and a fully functioning car, what can you do? You can take the keys away from them and/or sell the car (with the appropriate paperwork from the Court of Protection of course if the car is in their name). But I frequently spoke to families about this knowing full well that they felt such action would undermine the person with memory problems or would cause too many dramas.

This may be the case but do we have a responsibility in these circumstances to other road users? At a dementia conference during another driving debate I attended years ago someone raised the responsibility of the pub landlord – apparently if they allow someone to drive away from their pub whilst over the limit they have some kind of case to answer should that person then maim or kill whilst driving. In practice I am not sure how this would/could work, pub landlords rarely being  in posession of an up to date list of car users on their premises, one would imagine however, I would feel very guilty if I noticed that my husband had become an unsafe driver subsequently ploughed into a bus queue of people and I had done nothing to prevent it.

Of course there are many of us who will, in later years, use the car only for essential journeys, to and from the supermarket for example, which may be a generally quiet and well driven route. In fact someone called me once to enquire about the fairness of a driving test for her 70+ father who lived and drove only short distances in a rural area but would be tested in the middle of a busy city, that being where the test centre was. Whilst I could empathise with the predicament there is no specific driver’s license which limits people to certain roads and routes. In the meantime if you are worried about someone who is not happy with the prospect of NOT driving and won’t discuss it it seems there are only the options of serious action or no action at all. It’s just another tricky area to navigate.