TIPS FOR MAKING A DEMENTIA JOURNEY

For Brian was diagnosed with Frontal Temporal Dementia in February 2009 when he joined the many thousands of people who needed to learn to adjust his life and start his own dementia journey.

For most of us life is often a compromise but when the impact of short-term memory loss is felt, this compromise seems massive. Both before and after diagnosis, reactions may be :- feeling vulnerable, alone, scared, tired, challenged, wanting to fit in but rarely so doing, confused & unable to clear the mist, singled out for punishment and grief as in a bereavement….. in a funny way it is possible to grieve for the happy, carefree life one has lost.

On receiving ‘our’ diagnosis on 4 Feb 2009 we felt:
· really happy because our uncertainty was at an end
· relief that the cause was not a brain tumour or other life threatening ‘ thing’
· empowered because we could move forward
· one step closer towards receiving medication
· we had an opportunity to make choices, push back boundaries take risks.

SO, given that NICE ( National Institute for Health & Clinical Excellence ) have relaxed their guidance so that more people diagnosed with dementia can access a range of dementia drugs, what advice would we offer to anyone worried about their memory or that of someone close to them ?

* Firstly, make brief but detailed notes of occasions which cause you concern, including dates, times and outcomes.
* Be brave and consult your GP. Having specific written examples will overcome the emotional problem of trying to speak about issues which can be upsetting.
* Your GP will appreciate actual examples and referral to specialist help will follow.

We’ve seen from personal experience that NHS Gloucestershire takes their dementia responsibilities seriously. They continuously assess the impact of and further develop their Dementia Strategy. Over a period of several years they have been quoted by other statutory authorities as being a leading example of good dementia practice.

This is obvious from what we have seen since moving to live in Stonehouse.
Memory Clinics, Memory Cafes, Dementia Advisors, The award winning Living Well Handbook ( which has been translated into Gujarati, Bengali, Chinese, Urdu, Polish and Czech ) are but a few of the steps taken by NHS Glos. to help those affected by dementia and their carers to make Living Well With Dementia more of a reality.

So, having consulted your GP and received a diagnosis, what next ?

· maybe downsizing or simplifying to make life easier all round
· notifying DVLA regarding driving
· consider making two Lasting Power of Attorney documents ( Health & Finance)
· make choices of how you wish to go forward. Things you now find difficult or less enjoyable may be swopped for other activities that perhaps you never had time for.

When help is needed we hope for the very best in person centred care but we recognize that this requires a partnership between all concerned.

A lot of help is available including Carers Gloucestershire (+044-01452 872241) which provides an invaluable support and information network for carers and The Alzheimers’ Soc’y (+044-01452 525222 ), well known for its’ pioneering and supportive role.

Certainly everyone involved in a dementia adventure, whether in the home or in a care environment, needs to focus on the REAL meaning of life for the person affected with dementia, interpreting their feelings into words, their history into reminiscence & actions. By championing uniqueness you create care with a sense of own identity which does not fit within a recognised ‘ pattern ’ but utilises skills & attributes to help all concerned.

We need to remember the dramatic impact that emotional memories can have for each one of us and that can be emphasised for the person with dementia. It is good not to focus too much on the medical aspects of DEMENTIA but start with imbedding feelings of equality and caring in a joined up way … the unique person not the cause, the likenesses between all of us who experience diverse emotions, compromise and doubt.

I am convinced that positive, important daily interactions are key so a healthy and diverse social life can improve feelings of well being for everyone making their own dementia journey. The cumulative effects of boredom, lethargy and staring into space helps no-one, I’m sure you’ll agree.

It helps to remember that for those WITH a short-term memory the effects of joy, sadness, learning and success are cumulative and can build into a powerful crescendo of happiness and pride or sadness and disillusion.

For those WITHOUT a short-term memory, none of this is possible. On the negative side the detail of DISAPPOINTMENT and failure is LOST but the ‘low’ state can continue. However the build up of JOY doesn’t happen and even hours or a day later the cumulative THRILL of an event can be lost.

Finally, we aim to ensure that the quality of life is as positive as possible, looking for what can be done rather than find excuses for what cannot.

TOP TIP….celebrate successes with hugs, laughs and smiles, its’ the best medicine.