What You See in Dementialand

When Dementia Knocks

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.

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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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