The Dementia Care Journey (revisited)

terrypratchet

When I read about the “Building Dementia Pathways” conference yesterday it sparked my memory about a blog I wrote some time ago titled “The Dementia Care Journey”.

I didn’t realise how long ago it was written!

However, what struck me most about the original blog is that the ideas and proposals are even more relevant today than back then. Terry Pratchett was even further ahead with his famous quote (pictured above).

With over fours experience at the dementia coalface under our belt, in which time we’ve successfully supported people diagnosed and their carers, I think we’ve earned the right to make a positive contribution to the conversation on how to improve dementia lives from diagnosis to passing.

I don’t have an “ology” to my name or letters behind it. However, the evidence gathered from our golfers, their carers (the hidden victims) as well as family members puts me in a very privileged position to be able to offer so many practical & life-changing solutions to the dementia crisis facing society.

We all know that the current dementia health and support systems are not fit for purpose.

However, there’s no point blaming each other. All our time, energy and focus must be concentrated on fast-tracking the concept of providing a person-centred, compassionate, respectful & rewarding dementia care pathway for families living with this devastating disease.

With no cure in sight, the urgency for a better journey is growing every day.

To use the same analogy, the current dementia services are like our transport networks on Christmas Eve with heavy snow. A nightmare to navigate with no light at the end of the tunnel!

Let’s make a start on a brighter future by engaging with people at the dementia coalface who can help transform so many lives with their invaluable contribution.

Oh.. by the way, I’ve attached the original blog written some time ago that resonates louder than ever. X

When a dementia diagnosis is finally confirmed it has a devastating impact on the whole family. The support families receive immediately after diagnosis varies from excellent to “here’s a leaflet with some people you can ring”. Overall the initial support is tragically inadequate and erratic across the UK.

Getting the right support in place during the initial hours and days after diagnosis is crucial. It can either lead to living well with dementia or a rapid downward spiral into despair and tragedy, with a sense that “life is over”. Unfortunately for many families the support received is woefully inadequate, inappropriate or in most cases non-existent.

Then you arrive at the stage in the current journey where dementia support services are irrelevant, sporadic, impersonal and patronising.

This has to change – and pretty quickly too.

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With no cure for the devastating disease of dementia, the only way we can support families effectively is by developing “Personalised Dementia Care Journeys” (PDCJ’s) for the whole family.

Before I explain how PDCJ’s work, here’s some of the responses social entrepreneurs like me get to our pioneering work and ideas.

What? You’re mad? How can we do that? It’s too complicated! It will never work! Where will the money come from?

I can see why so many social entrepreneurs give up as they continually face barriers and encounter “glass ceilings” and negative mind sets. I think it’s mainly down to the fear of change. However, major transformation in dementia care is exactly what’s required if we are to provide sufferers with the dignity and respect they deserve.

However, my message to fellow social pioneers is clear – “Keep doing the right things, for the right reason often enough and you’ll achieve your social dream”.

So back to Personal Dementia Care Journeys (PDCJ’s)….

The journey begins with an information gathering chat with the carer and their partner diagnosed with dementia about their life history, hobbies, special memories and life experiences. Getting information about friends and immediate family is important too. It also provides a better understanding of the support network already in place.

At the same time information is gathered about general health & wellbeing. It’s important to get the background of both people as meaningful support will be required for the sufferer and the carer.

Once completed a Combined Care Plan Combined Care Plans For Our Golden Generation can be drafted, discussed, tweaked and adopted by all stakeholders – most importantly the primary carer! The beauty of this approach is that everything is designed around the needs of the family – not the structures and systems of existing health & social care services.

This whole process should take no longer than one week (YES REALLY!!)

Once in place the combined care plan will provide meaningful therapy and services for the person diagnosed with dementia, respite support for the carer (when & where they need it) and relevant support/counselling for the whole family.

Regular updates and adjustments to the plan will be completed to ensure it remains relevant and supportive for the full duration of their dementia journey.

The beauty of the Personal Care Journey approach is that it supports families from the diagnosis stage to keeping life enjoyable, right the way through to the end of life. It’s underpinned with the cornerstone values of respect, dignity, compassion and human rights.

Towards the end of the journey additional support is provided – including care at home (as this is the best place for most dementia sufferers). And finally, in the “twilight of the journey” help is provided to find a SUITABLE care facility and prepare the family for the inevitability of their loved one passing.

Holding the hands of families living with dementia from the start of the dementia journey to its conclusion will transform lives.

It will limit the impact of this devastating disease on their future health & wellbeing, leaving them with positive memories to cherish about the dignity, respect and priceless support their family received during their dementia journey.

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