Tag Archives: Power of attorney

Meeting to promote ‘Join Dementia Research’

Last week I was fortunate enough to be asked to speak at a meeting being held in Wakefield: the National Institute of Health Research Patient, Carer and Public Involvement away day. They were developing their strategy for the year ahead.

I attended with Sarah Daniels, Dementia Research Project Manager, as a lay member of Join Dementia Research. We were there to promote the forthcoming national launch of Join Dementia Research which is taking place on Tuesday 24th February. Both of us are involved with the launch down in London on that day – more to follow next week.

We decided that I’d go first with a talk about my journey and difficulty finding research:

I have a vested interest in research being carried out in the field of dementia. Being diagnosed with a progressive, deteriorating terminal illness focuses the mind on the here and now. If you were to ask those living with dementia what areas they deem to be most important within research, you would be presented with a myriad of options – but none more important than ‘a cure’ to this most stubborn medical enigma. I’m not naïve enough to think that if a cure were found tomorrow that it would mend those parts of my brain that are broken, but it would rid my daughters and all the generations below me of that ‘inevitability’ that a diagnosis brings.

I spoke of the post code lottery that appears to exist in whether patients are offered research at the point of diagnosis. No clinician on my journey broached the subject of research – I had to go looking for it. I knew from my attendance at the Royal College of Physicians, where I  met researchers, that they found it difficult to recruit volunteers, yet here I was having difficulty finding research – crazy.

Join Dementia Research’ is all set to address these issues, as it’s got the potential to become a ‘one-stop shop’ for researchers and willing volunteers. Now, clinicians will have no excuse for not encouraging patients to take part in research. Where once they would have to assess their applicability, now they will only need to hand over a Join Dementia Research leaflet and offer words of encouragement. This will empower the public sign up for themselves.I want to promote and encourage people to register their interest, but also encourage health professionals to approach and encourage their patients to register as well.

We also need to encourage those diagnosed with early onset to state in their Lasting Power of Attorney the advantage of documenting their willingness to take part in research once they lose mental capacity, if they so wish – to talk to their family about their wish. This would take away any ethical dilemmas faced by families in the future and give researchers access to those who are difficult to find at present.

The war on cancer and the amount of funding given to cancer research has seen a revolution in treatments being available – a cancer diagnosis is no longer the death sentence is was 40 years ago. We need the same to happen in the field of dementia research and Join Dementia Research will give us the tool to be able to bring together researchers with willing volunteers.

After Sarah delivered her presentation we were met with many questions – always a good sign. It evoked dialogue and discussion and they invited us to stay for lunch – another good sign and very nice too – so it was a very worthwhile visit.

More  on the launch next week………….

Lasting Power of Attorney

The Martin Lewis Money Show on Friday 23rd January advocated the need for everyone to take out a Lasting Power of Attorney. He’s 42 and he’s got one. None knows what is round the corner. I did mine myself – it does seem overwhelming when you get the form but if you work through it in small chunks it is as straight forward as any official form can be. There’s lots of help online. You can do one through a solicitor but it will obviously cost you a fee in addition to the £110 to register but it’s a small price to pay for peace of mind. Whatever it costs you it is nowhere near the cost to loved ones of unravelling finances if you can no longer look after your own affairs. Unless you’ve a Power of Attorney already, loved ones need to apply through court, which can be long and costly.

There are 2 types of Lasting Power of Attorney – one for health and the other for finance. I’ve done both so my daughters know exactly what I want to happen when I no longer have capacity. Some people put off having one because they think others have control over what happens immediately – this isn’t the case. It comes into its own only once you lose the capacity to make decisions. It is also a great opportunity to talk to loved ones about your wishes for the future – a difficult conversation but well worth having while you’re well.

You can only set up a Lasting Power of Attorney when you have mental capacity. Once you’ve lost capacity, it’s too late.

The Alzheimer’s society has an excellent section on its web site:


but if you need further evidence that it’s not just for those with dementia then you can read about it from Martin Lewis on the link below



Early diagnosis and new beginnings

31st July 2014 – the day I sat in the consultant’s room and received the official diagnosis. It wasn’t a surprise as we’d frequently spoken about the outcome in those terms. However, there’s always this slight hope in the back of your mind that they’d made a mistake and have now found the real cause of your symptoms. It wasn’t to be.

Some people may not want to know they have dementia – I was actually relieved to have a diagnosis. It meant I could finally bring a closure to all the uncertainty, to all the ‘what ifs’ , ‘buts’ and ‘maybes’. It enables you to look at life from a new perspective and to plan and take up challenges that might otherwise never have crossed your path. For example, talented researchers may be on the brink of a new breakthrough.  An early diagnosis has given me the opportunity to go on medication which may give me long enough to benefit from such discoveries.

It has also given me the opportunity to sit down and talk honestly and openly with my daughters and plan my future, which in turn has relieved them from having to make those difficult emotional decisions around my care and future treatment.  If more people had the same early diagnosis they too could plan their own future care and enjoy life while they still had the mental capacity to do so. It must be so difficult for loved ones to feel they’re making the ‘right’ decision if no discussions have taken place.

After the recent announcement that GP’s would get £50 for each patient diagnosed with dementia, my initial reaction was ‘any publicity is good publicity’ but I also wondered how many GP’s would find this an insult and yet another target to meet. Surely the vast majority of GP’s don’t need an incentive to diagnose…………I think one of the major hurdles to overcome is getting people to go the the GP in the first place and not being afraid to admit they may need help. After all there is still a stigma attached to the diagnosis of dementia for some people.

One Saturday a couple of weeks ago we sat down together and went through the difficult task of completing the Lasting Powers of Attorney. We were all drained at the end but at least we now have everything on paper. Receiving the diagnosis was just as difficult for them as it was for me but we’ve supported and protected each other through this. Needless to say they’re not just my rock, they’re my mountains and I wouldn’t be in the state I am today if it wasn’t for their love and support – it might also have something to do with me making a pretty mean Afternoon Tea as well…………….:)

A well deserved afternoon tea
A well deserved afternoon tea