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 – not appropriate – or in some cases non-existent.
Then you arrive at the stage in the current journey where dementia support services are irrelevant, sporadic, impersonal or worse still, non-existent.
This has to change – and pretty quickly too.
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 as enjoyable as possible – for as long as possible.
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.