Dementia is challenging. For a start, the word encompasses a range of diseases, each of which is complex and can be variable between one person and the next. Dementia also occupies a unique position between health and social care systems – which respectively use ‘medical’ and ‘social’ models when looking at assessing and treating “Need”, and which are powerful institutions that pre-date person-centred or flexible concepts of care. Physical disease processes that are not fully understood and presently beyond medical cure, the outward symptoms present socially, rather than medically, and so primary health care professionals don’t always see the need for medical interest or intervention. In addition, while disability movements have striven to change social and cultural attitudes towards ‘disability’ in recent decades, dementia again sits on the edge of this revolution. Dementias are not easily detected as a ‘physical’ complaint, and uncertainty as to what is ‘wrong’ can lead to suspicion, discomfort, stigma and association with mental ill health which has its own battle to fight against stigmatising attitudes.
Dementia is also closely associated with the dreaded inevitability of old age. Perceptions of old age, whilst changing, tend to be of a homogeneous, vulnerable group, despite the fact that diversity increases as we get older. It is easier to map the general social and physical development of children than it is of older people, yet the arbitrary era of ‘old age’ is assumed to be one of decline and burden, and therefore less attracting of interest and concern. If people use their personal experience as a basis for campaigning for change, it will be too late to change or influence, for example, provision of residential care, by the time we need it. As is the general issue with preventing, it is easier not to broach a problem if we don’t have to. There is also an expectation that younger people shouldn’t be interested in older people – this dementia adviser is 30 years old, and often receives comments about being too young to be bothered about old age. But the challenges of dementia don’t stop there – if only it was exclusively ‘older people’ who develop dementia. As with many diseases, while the risks increase the longer we live, it occurs in people who are not yet ‘old’, and these people again sit on the edge of convention – not only do they have to come to terms with an incurable disease at a time when they may remain in employment, but they do not fit in to the expectation of old age or the traditional home and day care packages that do not really fully serve the older generations. There is innovation and initiative that is starting to amend this, but in a time of austerity it is not yet happening on the widespread scale that is needed.
Then, of course, we come to the diversity of the individuals affected by a diverse selection of diseases, with a diverse set of symptoms. Each person, within each family, will respond differently and take a different approach to dealing with the conditions.
The consensus seems to be that concerns about dementia are best addressed as early as possible, to give the best chance of using any available medication to its fullest potential, to address underlying health conditions that can be treated, and of course to access the information and support that can help people adjust and steer round problems rather than relying on crisis resolution. Of course, being of social and diverse nature, personality is important, and getting to know those who are able to help is integral to their ability to support appropriately.
One natural response to a diagnosis of early stage dementia is to continue living ‘as normal’ for as long as possible, before the inevitable intervention by those big institutions who will look after us when we need. While this seems logical and sensible in the face of a disease that is degenerative, progressive and incurable, it actually reinforces the attitudes of old, that nothing can be done so why bother, and puts people at a greater risk of crisis, placing a heavier, more costly demand on services in the long run. Essentially nothing will change as long as people continue to seek help when they 'need' it, i.e. when they can no longer cope, have broken relatipnships and have recurrent hospital admissions.
But how to persuade people to accept support that encourages people to adjust routines, relationships, expectation and knowledge that have been ingrained over a number of decades? Especially when this goes against the still conventional wisdom that dementia equates to a set of inevitable consequences that require removal from visible society, when medical attitudes remain inconsistent and separate to social care provision, which itself can be fragmented between departments within one local authority. Whilst we are still searching for the elusive understanding that can stop, reverse or better still prevent, the dementias, the individual, social and cultural attitudes towards living with dementia are the crucial determinant of quality of life that people with dementia, and their families, can lead. By becoming actively involved in local dementia projects, encouraging others to take the leap and be active, people with dementia can not only help their own lives and potentially change their future, but they will be helping the wider scale shift in attitudes that is absolutely necessary if dementia is to have the recognition and understanding that is needed to manage the continued upward trend of prevalence. Each individual needs to be counted and visible for the diversity to be fully appreciated and provided for in care provision and wider society.
Age UK Trafford dementia support can be contacted on 0161 746 3944. See previous posts for peer support details.
These ideas presented are very general and not intended to be taken as conclusions of any research or absolute values. Comments welcome.
The World Alzheimer Association acknowledges that early diagnosis can lead to improved outcomes, better access to support, including “1 Optimising current medical management, 2 Relief gained from better understanding of symptoms, 3 Maximising decision-making autonomy, 4 Access to services, 5 Risk reduction, 6 Planning for the future, 7 Improving clinical outcomes, 8 Avoiding or reducing future costs, 9 Diagnosis as a human right” (p.27 http://www.alz.co.uk/research/WorldAlzheimerReport2011.pdf).
Department of Health information, including link to the national dementia strategy: http://www.dh.gov.uk/health/category/policy-areas/social-care/dementia/
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