Terry Pratchet got it spot on when he talked about how many people were in the firing line of dementia. He’s passed now but the challenges he alluded to still remain unresolved.
In order to deal with the dementia crisis we need to start by being open and honest about some uncomfortable, unpopular and unpalatable truths.
So here’s a few to start with…
- Diagnosis takes too long
- Support services are inadequate and arrive too late
- Families try and cope too long without seeking help
- Current resources cannot provide person-centred support
- Dementia carers are underpaid and overworked
- Health & social care commissioners are not embracing innovation
- Traditional systems & procedures are not fit for purpose
- Everything is too complicated
- Insufficient budget gets through to front line services
- Our health & social care leaders are failing to stand up to the scale of the crisis
My final and most important point is that we failing to give people the human right to live with dignity and respect when dementia comes knocking at their door.
Anyone starting to get defensive at this stage should probably not read any further. For those who realise that we need innovation, radical reform, future proofed support services and share my passion to transform the future of dementia care then please read on.
So let’s start with the exciting, positive and creative stuff.
Everything in dementia support needs to be designed with the families at the heart of it. Nothing should be too much effort. Dignity, respect, compassion and positivity need to be core values. Current leaders need to remember that at the heart of every diagnosis is an individual and a family with the human right to live life too.
So here’s some of the key elements of the framework in which we need to operate if we are to future proof dementia care.
- Early & accurate diagnosis
- Start planning early for the changes & challenges ahead
- Allow people to keep doing their favourite things
- Keep relationships intact (don’t let loved ones become carers too soon)
- Introduce new environments and support networks early on
- Create positive, inclusive and accessible environments
- Keep life as normal as possible
- Provide everyone with a sense of purpose
- Never mention the D word
- Compassion not sympathy please
- Nothing is ever too much trouble
- Over 70 % of all resources allocated to front line services
Seismic change is required in current thinking, policy and strategy. Research into finding a cure needs to be clearly separated from the support for families diagnosed for whom a cure will arrive too late.
The good news is that if we face up to these challenges now and work within a framework where families and front line services are at the heart of everything, then dementia care can be affordable and available to every family when this terrible disease decides to enter their life.
In the next blog I’ll share the part of my D-Plan on how to ensure early diagnosis and how to create a supportive structure for every family.