Thursday 16 May 2013

Mapping the future of dementia

It is inevitable I suppose that given the ageing population, there is an increased likelihood of an increase in age-related illnesses/ diseases. However, nothing evokes discussion and debate more so than dementia care and recent press reports of abuse and neglect in some of the hospitals and care homes across the country has only compounded the fear and anxiety that already exists whenever mentioning future or long-term care of a loved one.
Dementia is a special case, requiring specialist and specific care. In the UK, there are an estimated 820,000 people with dementia (both diagnosed and undiagnosed), a figure that is set to rise dramatically over the coming years. One estimate puts the likely number of people with dementia at 1 million by 2021. As the number of cases rises, so will costs. Estimates of the current cost of dementia care in the UK are in the region of £23 billion per year - this includes the cost of social care, health care and unpaid carers. The Prime Minister launched his Dementia Challenge this year as part of the National Dementia Strategy, describing this as a 'national crisis'. Evidence suggests that diagnosis is important but the UK does not perform well compared to other countries with a paltry 41% which includes the diagnosis as a secondary event (late diagnosis). This is a disgraceful level of diagnosis.
There are of course a plethora of problems to tackle when it comes to implementing a national strategy, not least of which are the swingeing cuts to public services and the enormous strain that the NHS is currently under. However, this does not preclude effective diagnosis, nor indeed effective treatment especially in the early stages. Additionally, there are patient and professional barriers to early diagnosis (described below) and people need to be convinced of the benefits of early diagnosis particularly with long-term planning and ensuring adequate support being put into place which could, in the long term save public money by reducing the need for care homes places and unnecessary admissions to hospital.

Barriers to Diagnosis
It is only very recently that proper studies and research have been conducted on the poor performance of the UK regarding early diagnosis of dementia. Interestingly, it has highlighted a number of barriers to this process categorising them into patient and professional barriers, which is based on interviews with Alzheimer's patients as well as carers:

Patient Barriers:
  1. lack of knowledge about dementia and the closeness of its symptoms to those associated with ageing
  2. the gradual manifestation of dementia and the inability to treat problems as acute and serious
  3. fear of dementia, and the denial of the disease and its implications
  4. the lack of trust in the health system with regard to medical practitioners
  5. the lack of support, either from family or friends, or professional support
Professional Barriers:
  1. problems in primary care associated with the capability of GPs
  2. time constraints on GPs
  3. GP perception of the benefits of diagnosis
  4. GPs feeling that they lack the necessary training, confidence and time to deal with dementia
  5. perception in the medical community that there is little that can be done for those with dementia
  6. perception in the medical community that a diagnosis can do more harm than good
Many of the accepted assessments for diagnosis is also skewed towards memory and recall. Anyone who has been affected by dementia will only gladly say that this is only one part of the disease and there is very little emphasis on loss of personality and reasoning ability which leaves patients vulnerable and utterly reliant on honest, decent and moral carers, be it family or health professionals. Moreover, there is the danger of a lay person's prototyping with a heavy reliance on the accounts of family members and friends which may not always be in the best interests of the patient.

Policy Interventions
Some policy interventions are undertaken most effectively and efficiently at a national level, including regulation of the medical professions and national awareness campaigns. However, the primary role of national policy makers and commissioners should be to create a framework within which local commissioners and GP surgeries are encouraged to innovate to develop best practice when it comes to increasing diagnosis rates. Getting this right could result in long-term savings due to reduced care home placement and admissions to acute care in hospital. Activities that could increase diagnosis at a local level could include:
  • outreach work
  • targeted screening
  • investment in awareness campaigns
  • building support networks for those without close families or friends
  • case-finding in primary and secondary care
It is clear that a radical approach is now warranted to tackle the current situation on dementia as well as to implement measure in order to avert a potential crisis for an ageing population. This is not
exclusive to the UK but a global issue given that humans are living longer all over the world. planning for the future is an essential step and addressing the poor levels of diagnosis at an early stage is crucial. There are a number of challenges for sure especially in light of cuts and lack of provision of adequate services in rural locations (postcode lottery springs to mind!). However, this should not deter campaign groups and policy makers in implementing effective strategies in place in order that patients and their families can be better supported in their old age and enjoy a high quality of life for as long as is possible with a degenerative condition such as dementia.

For further information and advice visit: