To all Healthcare Professionals…..#handouthope

Which me am I today?

To all healthcare professionals…..

Imagine yourselves in my shoes – being given a diagnosis of Young onset dementia. Your life falls apart, you feel worthless and of no use to anyone any more……Services are non existent so you feel abandoned.

That’s what happened to me when I was diagnosed.

Now, Imagine, if someone came along and asked for your opinions, asked you to be involved in gathering information. Someone who was genuinely interested in what you had to say.. Imagine how that would make you feel………
Imagine the impact on your well being – finally hearing someone acknowledging that you still had something to give; that you still had a valuable opinion and views that mattered.

That’s what happened to me when I started to be involved in research.

As soon as I was diagnosed I wanted to take part in research – however, my clinicians decided for me that…

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It really is this simple. Just do it! — george rook

What are we going to do about wards filled with people living with dementia? We’ve all know about the estimate that 25% of inpatients have a diagnosis of dementia. We know that inpatients with dementia (not primary cause) stay in hospital three times longer than others. We know that people living with dementia are often […]

via It really is this simple. Just do it! — george rook

Spare a thought for us this Christmas

A great insight. Thank you, George x

george rook

I realise I haven’t been looking forward to Christmas this year.

I’ve been miserable.

Humbug, writ large.


Cards have been arriving in the post, people I work with giving them…

A little party at one trust, carols, thanks, all that…

I ducked the second, Christmassy, half of that one.

And now I know why.

It’s time to be happy, to meet people at parties, over dinner, in the street, and be happy.

And talkative.

To tell people what you’ve been up to, how the family are, ask about theirs…

And that means remembering…names, facts, events…which takes time.

Then the words to explain those events and feelings…

It takes effort.

Moray FirthRoss and Cromarty
Scotland Moray Firth Ross and Cromarty Scotland

On Saturday night this crystallised.

I can’t keep up any more. Not at all. I can’t get into conversations.

By the time I’ve thought of a word or idea they’ve all cut in, and my…

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Journeys in Hopeful Positivity.

A new blog from a brilliant lady – please read 😊 x x


New Years Eve.

It’s just a day, right? Another date in the calendar, just a little more significant than any other because it marks the final day of one year and the start of a new one.

It’s the time when we make promises that we won’t be so flawed, that we’ll do and be more or less of this and that. A day when we’re meant to be celebrating, celebrating our lives, the end of a great year, or just surviving it, ready to start a new year filled with excitement and motivation. The pressure to be “having fun” can be immense.

Yet, at the time of writing this, it’s 8.25pm and I’m tucked up in bed, eating chocolate.

I was really upset an hour ago. I had a sudden panic of, “Is this it?”, “Will nothing change?” in response to something that had happened and it felt like…

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I love my work, I do. I enjoy talking with people with dementia and their families, and trying to offer reassurance, explanations, guidance through the system; a hand to hold, a listening ear and a smile when they are often at their most anxious.

However, there is an increasing frustration that I feel, and almost a helplessness. The resources are not there. You can see exactly what people need – sometimes it’s something as simple as a visit to check they’ve taken their tablets and eaten their dinner. But they can wash and dress themselves, so they’re not eligible for Social Services provision. They need night care. Not provided. They need someone to take them so that they can do their own shopping. Company. Social contact and appropriate occupation. Respite for carers that meets the needs of the individuals. Out of Hours support from mental health services. Services appropriate for younger adults with dementia and their families. Support after diagnosis (currently, locally, people diagnosed with dementia are kept on the Memory Clinic caseload for 3months – assessment-diagnosis-prescription-discharge). Services which can avert crises, which will keep people at home for longer. Individuals waiting in acute hospital beds for assessment for discharge planning; waiting while their mental and physical states deteiorate.

I could go on, believe me, but I’m sure that’s enough for now.

Other areas have better support networks.

And it’s all down to money. Post code lotteries should not exist in 2016, but with the fragmentation of the NHS and Social Care, different CCGs have different priorities.

Shouldn’t we all be playing the same game, with the same goal?

And don’t people with dementia and their carers deserve the highest quality care and support, no matter where they live?

X x

The Business of Remembering…A Sense of Time and Identity — Alice in Memoryland

“The business of remembering what you did that day, or what you might want to do the next, I think, is essential for creating an overview of your life – that overview is what fuels plan-making and that ties in deeply with identity.” In case you missed it, this comment was made about my last post by Jabberwalk, […]

via The Business of Remembering…A Sense of Time and Identity — Alice in Memoryland

What You See in Dementialand

Welcome to Dementialand

This is the fifth of a series of five posts about the senses in Dementialand.

Today we focus on sight.

An entire book could be written about how dementia changes how an individual sees the world. I want to stress that dementia itself does nothing to impair the eyes. Dementia, however, does make it more difficult for the brain to interpret what the eyes see. It is the visual-perceptual system that becomes damaged.

Sometimes I will spend time with someone who has dementia and think that their words and actions make little sense. It is only later that I realize that they were making perfect sense considering their experience of the world. It’s just that their experience of the world and my experience of the world are different. And that’s the challenge.

A couple of years ago, I was doing an informal activity with a small group of nursing home residents when…

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Why are we not there yet?

Last week I attended a conference about Young Onset Dementia – it was a national event, and it was great to hear from other regions and innovations in care provision. However, a great deal of what the keynote speaker was saying gave me a feeling of “haven’t we been here before?”.

I have been working with individuals with dementia for nearly twently years, and despite the development of Memory Clinics, treatments fr Alzheimer’s being more freely available, the launch of the Dementia Strategy, the Prime Minister’s Challenge, and numerous other papers and guidelines, I often feel that we really haven’t moved forward. I read the blog of a care partner for his wife who has Vascular Dementia today, reporting the distress caused by yet another assessment by Social Care. We still have separate systems for documenting our assessments, which don’t talk to each other, and this necessitates different professionals asking the same questions over and over again. This gentleman asked whether, as dementia is a progressive disease, was this really necessary, given the level of distress it has caused his wife.

It still seems to be a “post code lottery” when we look at care provision for both the individuals with dementia and their families/loved ones/carers; more so if you have a Young Onset Dementia. Community Mental Health Teams (CMHTs) across the country have different criteria for caseload management; Memory Clinics, which used to follow those on treatment from diagnosis to near End of Life (where treatment is no longer appropriate, but likely when the family needs their support the most), now seem to be more assessment-diagnosis-treatment commencement-discharge.

Where is the long term support for these individuals with progresive, degenerative conditions? Where is the emotional support, post-diagnosis and beyond? The voluntary sector have excellent groups and services, however they don’t have the guarenteed funding or ever-expanding resources to ensure their local population is supported adequately. Without the ongoing support from the CMHT, individuals are only referred back when they reach crisis. G.P.s in my area are picking up annual review of treatment with Memory Drugs, but in a ten or fifteen minute appointment, can they undertake a holistic assessment of the person’s needs and those of their “carer”?

There is no middle ground of care provision, which could avert the crisis in the first place. It seems to be moving backwards, when we are being challenged to provide care equitably across the country.

I know that there are services out there which offer fantastic support, and I am in no way knocking those out there working so hard to try and fill the gaps. But there are a great number of gaps, and this should not be the case. Frustrated.

X x

Five Creative Tips for Meaningful Engagement

Dementia Journey by Deborah Shouse


Each person I interviewed for Connecting in the Land of Dementia inspired me with something meaningful and unique. I wanted to share a few of their ideas with you.

Before I do, here’s a question: What does the song FrimFram Sauce, the recipe for Johnny Marzimagesetti, and cooking have to do with creativity and dementia? Join us Sunday October 9th at 1:30 at the Kansas City Plaza Library to find out!  RSVP 816-701-3407

The Often Hidden Poetic Potential

“Value what people with dementia are saying, write it down, tape record it, affirm them when they say interesting or beautiful things because that’s their personality showing through in a new way,” says John Killick, internationally acclaimed poet, workshop leader, and author of  Communication And The Care Of People With Dementia.

Even though he’s been orchestrating workshops for years, John is still amazed at the strength of the imaginative…

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