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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