Inextricably Dementia

We started KareInn to help provide tools to allow better and more empowered caring for the elderly. Inextricably linked to this, is the care of people with dementia, a giant population of people who need more care than most. Dementia has often suffered from the image of being ‘something that just happened to the old’, but we as KareInn are proud to continue to beat the drum, and recognise that this is a Disease – a truly cruel Disease – but one that we can and will fight against. People with dementia will never be far from our thoughts or technology development.

If you reach the age of 85, you will have almost a 1 in 2 chance of developing dementia

HOW BIG IS THE DEMENTIA PROBLEM?

Sorry to list a bunch of statistics, but these ones are important:

There are over 850,000 people with Dementia in the UK. When I first paid attention to the term Alzheimer’s just 15 years ago, this number was around 650,000. This number will top 1 million people in 2020. Worldwide, there are around 40 million people with Dementia. By 2050 this will be 150 million people.

If you are reading this, if you reach the age of 85, you will have almost a 1 in 2 chance of developing dementia. This means a high chance of either spending your final years with the disease, or caring for a partner with it.

The Disease is the only Top 10 killer globally for which we have no cure.

The cost of Dementia is truly staggering, in the UK being over £26bn per year – more than cancer and heart disease combined. A similar study estimated the cost in the USA at $200bn rising to $1 trillion per year. The US GDP is currently only around $2 trillion!

For the avoidance of doubt, dementia is an umbrella term for the syndrome caused by one or more underlying diseases – Alzheimer’s Disease is the most common in c.80% of cases, but there are types such as Vascular Dementia, Frontotemporal Dementia, and Dementia with Lewy Bodies.

INEXTRICABLY LINKED

Our initial work has been to develop tools to help carers in the care home. Over 80% of residents in care homes have dementia or severe memory problems.

More broadly, we are looking to help anyone that requires care. People with dementia always will.

WHY IS IT LIKE THIS?

Dementia represents the long-term deterioration of the brain. One of the best analogies I have ever heard, likened the effect to the brain being a road or rail system.

The damage represents some of the roads or tracks closing. As with the traffic on a Monday morning, if there are a few closures, you can still generally get to work, albeit a touch late. This is the early years of dementia. Eventually however, too many roads are closed, so you are very late to work, or even can’t get to certain areas of town. It is for this reason that carers will often notice a significant drop-off in capability of an individual with dementia. The reality is that the damage has been consistently happening, but the brain has a remarkable ability to find detour routes, until it can no longer. But this impacts everyone in a different way.

Although some good progress is being made, we still do not fully understand what is causing these closures. Although we have identified some of the underlying parts of the story in the brain, there is still a lack of understanding around some of the basic science in dementia. Without this understanding of the basic science, drug development is more difficult and further down the road. It is not inaccurate to say that dementia is 20 years behind cancer in this regard. It is also worth noting that the amount spent on cancer research is 5-10x more in most major societies (in part because it is more advanced).

It is the deterioration and element of unpredictability that make dementia so difficult to care for. 6 times out of 10 an individual may be able to do a task, but this will soon drop to 4 times or 2 times out of 10. As a carer, do you empower them, and let them try and fail (or fudge it, so they think they have succeeded), or try to find other tasks they can still do? The answer is that it depends, a carer must make dozens of these decisions every single day different for a wide range of situations, and treat each one differently, and each coming with their own set of ethical questions.

GENUINE PERSON-CENTRIC CARE

Genuine person-centric care is about understanding the capabilities and desires of an individual, what these look like today, and understanding how they may evolve. This is really hard. The easy choice, is to put someone in front of a tv for 12 hours, no decisions needed, no requirement to confront this myriad of difficult choices, and offer a couple of platitudes such as “do you want chicken or ham?” at lunch time to give the veneer of person-centric care.

BEST PRACTICE & MUCH BETTER INSIGHT

Genuine person-centric care is about understanding the capabilities and desires of an individual, what these look like today, and understanding how they may evolve

A big angle to what we are trying to achieve with KareInn is to work with carers and researchers to work out the best way to help people in certain situations, but then help to educate carers across the country so that they can help more people ‘at the coal face’.

The really interesting thing, is that this becomes a very self-fulfilling cycle, the better our tools become at helping carers to look after the people they care for, the more information we will have about how best to care for people – and then can make even better tools that help thousands more – but equally can help to make this even more personalised to every single individual.

At KareInn we are working with carers who understand that caring for someone is a truly wonderful and fulfilling experience if done well, but requires constant effort to give the best possible care for an individual. Our technology is simply one more tool in the toolbox for helping this to be done well. Our link with dementia remains inextricable, because it is our duty to provide help where we can, to those who deserve it.

John.