Today is the start of Dementia Awareness Week. The Alzheimer’s Society are running a campaign ‘Remember the Person’ which is a good byline, if only it could be remembered.
In the wave of headlines talking of ‘dementia timebombs’ and ‘care crises’ its unsurprising that the presentation of ageing and dementias (although important to note that dementia is not a part of the ‘natural’ ageing process) is seen in negative lights and that ‘remembering the person’ is often the last thing that happens.
This is important generally, but it is particularly important in health and social care settings when all too often systems have been commissioned and organised for people who do not have dementia – and services are not making allowances for the additional time and skill needed to be able to give people who have dementias the dignity of improved communication and facilitated communication.
While the Alzheimer’s Society concentrates on the ‘Remember the person’ in day to day life, I’d like to add my own ‘wish list’ to their campaign in terms of health and social care professionals, managers and commissioners and add a few pleas.
-Remember that caring for someone with a dementia, whether at home, in hospital or in a residential setting, requires particular skills and commission appropriately. Time for training for staff and space and time to promote communication has to be built into commissioning costs. This cannot be done in 15 minute slots. It cannot be done by agencies that do not offer consistency of care. This is detrimental to the individual who is cared for and the family around them.
- Remember to support the family and friends of those who care for people with dementia. Do not punish a family financially and through pulling back support because you are relying on their family because the more pressure that is put on family carers without support, the greater the costs in terms of longer term ill health and distress. Support doesn’t always have to have a high financial cost. It can be about support in other ways and linking in with carers services. They are there for a reason.
-Remember that not everyone who has dementia has family or friends around to advocate for them or support them. When you roll out programmes like ‘personalisation’ and automatically assume that everyone wants ‘direct payments’ and deliver two tier qualities of service, they may (and currently do) exclude those who may not be able to manage the direct payments themselves and who don’t have family to advocate for them. There is an imperative to bring the voice of people who lack capacity to the agenda of ‘choice’. My own solution would be to build in the requirement for independent advocacy into the processes and into the budgets. We must demand better in terms of personal care delivery for all, but especially those who cannot or do not feel able to (due to power imbalances) speak up for themselves.
- Remember that the person who is being cared for is not one of ‘the elderly’. They are a person and an individual who has loved and who has been loved. They are a person with aims, ambitions and goals. They might not be able to express them as well as in the past but having memory problems does not mean that someone necessary lacks capacity or communication skills – it can though, take more time – regard humanity as having worth. When we have to make decisions on behalf of others, remember to treat everyone as you would want to be treated but remember not everyone wants what you would want.
- Remember not to dismiss or diminish those who have dementia. While, depending on the type of dementia ‘recovery’ can mean different things, what it absolutely does mean is not giving up hope and building on the strengths of those around. We have to think about living positively with dementia. Too often within social care and health services, I have seen other services discriminate against people with dementias and older people because they make assumptions which are dismissive. We should never make assumptions and never extinguish the hope of facilitating a better quality of life which build of the strengths of individuals. Never.
Let’s hope that Dementia Awareness Week is successful and makes providers and commissioners dwell on the need for awareness of the issues of dementia, as well as the ‘general public’.
photo by Susan NYC Flickr