Following the success of Tony Blair’s HIV/AIDS summit, on Thursday 11th December, David Cameron used his G8 Presidency to hold the first international summit on Dementia. To take this opportunity is to put dementia on the world stage – both as a political issue and as a discussion topic in society – is a significant step. However, the action of the G8 Dementia Summit has to go beyond the political point scoring and facilitate real change.
In order to achieve this change, by the summit’s target of 2025, social work has to have a key role. The introduction to the summit clearly highlighted the ‘silent crisis’ that Western society is facing – the number of dementia sufferers is set to treble to 135 million by 2050, with 71% of those coming from low-middle income families.
But what to do about it….
Representatives of all the countries that form the G8 (the UK, Canada, France, Germany, Italy, Japan, Russia and the USA) signed a declaration that set out the actions to be taken, between now and 2025, in order to ‘tackle’ dementia. The actions include, but are not limited to, increasing the funding for dementia research, identifying a cure or effective treatment, investing in new care and prevention models, and ensuring that those with dementia are treated with the dignity and respect they deserve.
Perhaps one of the most key actions identified by the summit is to engage society in taking action against the stigma that a dementia diagnosis carries. This could fundamentally change social work’s role in the support of dementia sufferers. As a frontline social worker, I often come across those who live with dementia and their families at crisis point. Social work intervention at these times is often vital, but can be traumatic. Not only are the service users and their families trying to navigate this crisis but they also have to cope with the result of the social work intervention; in the most extreme of these cases, this can result in the service user moving away from the family home. Many people with a dementia diagnosis are often struggling to come to terms with this devastating diagnosis and the stigma this brings; therefore, they do not want to approach social services for assistance and support – something which carries its own stigma. However, this means that social workers are unable to support service users and the families during the calmer times to introduce preventative measures and a long term care plan. More investment in social work is required to ensure that social workers can provide these measures and plans as effectively as possible.
Prevention and long term care planning are themes that should run through dementia care. The G8 summit clearly identifies that diagnostic and treatment services, in the UK, are lacking in an effective approach. Whilst the current level of austerity should be acknowledged when discussing this, it is estimated that less than 50% of dementia sufferers receive a formal diagnosis; even fewer receive effective and appropriate treatment. The Department of Health has acknowledged that whilst early memory diagnosis clinics exist, much more has to be done to make them effective – at the current time, there are long waiting list for both tests and diagnosis. Results can only be received following the initial referral to a memory clinic; GPs, social workers and other health professionals needs to do more to make sure that they are referring potential dementia sufferers to these clinics for testing.
I have recently been working with an older lady, following a number of concerns raised by neighbours and other members of the public. When first meeting this lady, it was very clear that she was experiencing a significant level of cognitive impairment, which went beyond the initial stages. When discussing this with her GP, he acknowledged that this lady was probably experiencing a type of dementia but he had not made a referral to a memory diagnostic service, as he believed that ‘nothing could be done’. This is unacceptable. This has resulted in this lady experiencing a significant amount of distress as she is unsure of what is happening to her, as well as an increased reliance on kindly neighbours and the Police, who were often returning her home when she became lost in town. It is obvious that this case could have been handled so much better, with greater access to diagnostic services and preventative action from the professionals involved.
One of the main aims of social work intervention – and identified by the G8 – is for those experiencing dementia to be cared for and supported in the community for as long as possible. As discussed above, prevention and long term care planning have a role to play in this. What is also important, however, is access to other resources, such as flexicare/extra care housing. This is an area in which public health organisation should be involved, not just frontline social workers and primary/secondary health professionals.
Flexicare housing schemes are a resource that sits between the provision of sheltered housing and residential care. Similarly to sheltered housing, each resident has their own flat and is able to access communal resources. However, there are also carers on site during the day and night, to ensure that the care needs of the residents are being met. For many of those who experience dementia, this type of accommodation is ideal – they are provided with the care and support that they need, as well as being able to remain in the community. However, there is a significant shortage of these resources around the country. As many areas are struggling with a general shortage of social housing, some housing organisations have stated that only existing social housing tenants can move to flexicare accommodation. This results in those who own their own houses moving straight into residential care, which may not be the most appropriate action. What is required is for each area to have a provision for both existing social housing tenants and existing home owners. It is likely that this would serve to reduce the number of people moving into residential care each year.
The G8 were keen to explore the current model of dementia care being utilised in France. Steps have been taken to frame dementia as a societal problem, rather than a health-related problem. This has resulted in health and social care services looking beyond a dementia diagnosis and formulated a person-centred approach to assessment and service provision. This approach includes simple actions, such as looking at a person’s life and background in order to explain some of their behaviours, rather than just seeing the behaviours as things that need to be managed. English dementia care has been heading in this direction for some time; however, at times, this can appear to be largely tokenistic. Access to services can be reliant on a formal diagnosis of dementia – something that is often not being provided, as well as symptoms being seen as things to manage rather than explore.
Social work should be at the front line of transforming dementia care – with or without a G8 summit. The summit is right to acknowledge the importance of ‘behind the scenes work’, such as scientific research and testing. What cannot be overlooked, however, is the frontline battle with dementia – an issue that frontline professionals experience on a daily basis. Therefore, it is key that further funding and investment is made into these areas, including social work, to ensure that social workers can support those who experience dementia to come to terms with their diagnosis, prevent crisis and develop long term care plans, so that they will, in the future, receive the care they want, when they may not be able to communicate their needs and wishes.
The G8 summit is right to bring dementia to the world stage. Now it needs to act as the catalyst for change – both behind the scenes and on the frontline. We should not be waiting for 2025 to see significant improvements, progress can be made today.