According to The Alzheimer's Society, there are currently 850,000 people in the UK with some form of dementia. It's estimated that 1 in 3 people will suffer from it in their lifetime, and that by 2021, one million of us will have dementia.
As the founder of Elder - a business that provides live-in care for the elderly and those living with dementia - I work with families dealing with the day-to-day reality of dementia and know that a diagnosis can stop you in your tracks. However, I also believe that the conversation around dementia needs changing, and that a positive look at the potential to live well with this condition should be on the table.
As part of Dementia Awareness Week 2017, here are four big dementia myths that need to be challenged, to help those with a diagnosis and their families on their journey.
Myth 1: Dementia stops you living a full life
For many, the response is to withdraw, to retreat from interests and into the identity of "someone with dementia". But those living with dementia remain individuals, and it's important that they don't stop doing what they enjoy in life.
In the early stages of dementia someone may only need light help day-to-day from a carer, and continuing to maintain a normal life as much as possible is vital, and can even slow the disease progression.
Keeping up interests, social life and family connections are the pillars of a full life - and there is no reason to stop enjoying them. Anticipation is key in dementia. Staying on top of assessing when needs change, as they inevitably will, and the support to put in place to help - whether home adaptations or increased care - will mean you can continue to enjoy life for a long time to come.
Myth 2: It stops you living independently
Dementia symptoms are progressive and will get worse with time, but how quickly and in what way will depend on your general health, type of dementia and other factors. The home is our last bastion of independence, and the increasingly popular option of live-in care from companies such as Elder can empower people to make this choice - doing away with the "inevitable" move to a care home in the later stages.
In live-in care, a carer lives with a care recipient, assisting them both in daily living tasks, but also in supporting their social life, interests and even helping to look after pets.
Independence is also a matter of adaption, and there are plenty of things that can be done to ensure an environment supports independent living. A home assessment and interventions - whether low-tech such a day clock to help orientation or high-tech like a GPS tracker - can be the difference between incapacity and independent living.
Specialist sites such as unforgettable.org have ideas and expertise to help. Exciting initiatives such as the Dementia Dog project are also bringing other solutions into the dementia space, training assistance dogs to help with the challenges the condition can bring.
Myth 3: Dementia means being housebound
Having cognitive or memory challenges does not mean that the world outside your door is now a foreign land. With support and planning it's not only possible but - one might argue - imperative to enjoy things regularly, whether days out, trips to a museum or gallery or even holidays.
Staying active has positive effects on co-morbidity, as well as big wellbeing benefits. In the wake of the Prime Minister's Challenge on Dementia 2020 launched in 2010, there is now greater awareness of the need to support those with dementia to live well and fully.
This has translated to plenty of initiatives focused on accessibility, whether that's a dementia-friendly theatre production, special woodworking sheds or an accessible National Trust property. A particularly interesting project is the Dementia Adventure charity, which takes a positive view of "risk" to enable people with dementia to have adventures in nature, from hiking to sailing and even supported driving. In this way, it provides people with amazing experiences, and challenges the narrative that to have dementia is to cease to be engaged with the outside world.
— YoungDementia UK (@YoungDementiaUK) May 18, 2017
Myth 4: You lose yourself
You may worry that you will lose yourself as the dementia progresses and retaining dignity and that essential sense of self, even when cognition and memory falter, is fundamental. Arts organisation, Arts4Dementia, for example, believes that access to creative arts should be encouraged at the point of diagnosis, as part of a more holistic look at its role for people with dementia.
Even years after memory has gone the creative part of the mind can still be working well and self expression can continue to help link a person to themselves. Research has also found that musical memory survives relatively well and is a particularly good cue for autobiographical memories, which reinforce our sense of identity and underpin how we connect with people. In dementia and Alzheimer's recent memories disappear from recall much quicker than those formed many years ago.
With family or carer support, reminiscence therapy can help a person link back to happy times, through cues such as photographs, music and places. This can be done using personal contact, with special products or even apps - or be part of a larger project held by a local museum.
An alternative use of stored memories that still remain, is being used by the Contented Dementia Trust, whose SPECAL method helps people with dementia to use long-term memories to make sense of the present and navigate through daily life, staying connected to themselves in this way.
Elder provides 24-hour live-in care with an emphasis on companionship as well as specialist care and daily living support, so that those with dementia can enjoy a positive and independent later life. To learn more visit elder.org