Caregiving and dementia/Topics/Diagnosing dementia
This NPA focuses on diagnosing dementia and planning for the future with people who have dementia.
In surveys conducted by the SA & NT Dementia Training Study Centre (Dementia Needs Analysis 2008 and Training Needs Analysis 2010), people with dementia have spoken of issues concerning gaining a timely diagnosis and information from their local general practitioner (GP). Research shows that GPs are often reluctant to diagnose dementia for a variety of reasons including a fear of damaging their relationship with the person and the belief that there is no curative treatment option yet available. This project will therefore address several issues: GP attitudes, diagnostic tools, time taken for diagnosis, effectiveness of drug treatments, symptoms of dementia, and issues concerning diagnosis of younger people.
Individuals who have concerns about their memory are likely to visit their GP (Quality Dementia Care: No time like the present: the importance of timely diagnosis, September 2010) and evidence from a variety of research indicates that most people who have concerns about their memory believe early intervention is necessary – particularly in order for them to properly plan their finances, lives and future care arrangements.
However successful early and timely diagnosis of dementia is more infrequent than it is common place.
In Australia, families first notice symptoms of dementia an average of 1.9 years before the first health professional consultation and there was an average of 3.1 years before a firm diagnosis was made, which was consistent with other overseas studies. The consequence of this delay is a lost opportunity for earlier medical and social interventions for those suffering dementia and their families (Quality Dementia Care: No time like the present: the importance of a timely dementia diagnosis)
- GPs lack confidence or training in diagnosing dementia. GPs were found to have difficulty in differentiating normal ageing from dementia and did not perceive a need to determine a specific diagnosis.
- A scarcity of specialist diagnostic services, particularly in rural areas combined with the patient’s impaired ability which reduces the accuracy of patient history and a lack of a recognised quick-to-administer screening tool
- Negative attitude to dementia. There is a stigma associated with dementia that also encompasses doubts about the patient’s ability to cope with a diagnosis and the efficacy of medications.
Furthermore, GPs perceptions of the barriers to a timely diagnosis of dementia have also been investigated by Paterson and Pond who highlighted that GP’s do rely upon patients to alert them to specific concerns or issues and this can delay diagnosis as people with dementia can lack insight into the problems they are experiencing. The research also indicated that GP’s may also become used to treating existing illnesses and are not always on the look out for emerging pathology.
Assessment of Dementia is more than Diagnosis
View this lecture here.… 22 November 2011 Professor Henry Brodaty University of New South Wales 1 hour 28 minutes 45 seconds
After Diagnosis, Planning Ahead
What is Advance Care Planning?
According to the Advance Care Directive Association Inc it means thinking about, discussing and writing down your wish for care or treatment if at a future time you are unable to speak for yourself because of illness or injury .
Advance Care Planning is not just for people with a diagnosis of dementia, it is useful for everyone.
People with dementia or other chronic illness are especially well-served by making their wishes for treatment known to family or carers and formalising this with a Power of Attorney document and an Advance Health Directive. It is important to give attention to these matters before the person loses the capacity to make these decisions, as legally they cannot appoint an attorney after they lose capacity. There is some lively debate about the amount of decisional capacity a person retains well into the dementia journey, particularly if matters are explained carefully and they are able to demonstrate awareness of the consequences of their decision. At any rate, to reduce stress and conflicts, it is wise to settle these matters when a person is sound of mind.
An Enduring Power of Attorney is a legal document used to give permission to someone to conduct business or financial affairs on behalf of another person.
An Advance Health Directive is a legal document that enables an individual to give instructions about their healthcare, including special health matters, should they lose capacity to make their own decisions in these matters. Specific directions can be recorded about the care they would want and under what circumstances .
- Dautzenberg PLJ, van Marum RJ, van der Hammen R, Paling HA: Patients and families desire a patient to be told the diagnosis of dementia: A survey by questionnaire on a Dutch memory clinic. International Journal of Geriatric Psychiatry 2003, 2003(18):777-779.
- Elson P: Do older adults presenting with memory complaints wish to be told if later diagnosed with Alzheimer’s disease? International Journal of Geriatric Psychiatry 2006, 21:419-442.
- Hdroyd S, Snustand DG, Chalifaux RN, 1996. Attitude of older adults on being told the diagnosis of Alzheimer’s Disease. Journal of American Geriatrics Soc 44:400-403.
- Jha A, Tabet N and Orrell M (2001) Tell or not to tell – comparison of older patients’ reaction to their diagnosis of dementia and depression. International Journal of geriatric Psychiatry; 16:879-885.
- Marzanski M: Would you like to know what is wrong with you? On telling the truth to patients with dementia. Journal of MedicalEthics 2000, 26:108-113.
- McWilliams E: The process of giving and receiving a diagnosis of dementia: an in-depth study of sufferers', carers' and consultants' experiences. PSIGE Newsletter 1998, 64:18-25.
- Paterson N & Pond D. The barriers to the early diagnosis of dementia and diagnostic disclosure in primary care. Alzheimers and Dementia 2009 Jul; 5 (4): Suppl:185.
- Paterson N & Pond D. Early diagnosis of dementia in primary care in Australia: a qualitative study into the barriers and enablers. Alzheimers and Dementia 2009 Jul;5 (4) Suppl; 185.
Advance Care Planning
- Advance Care Directive Association Inc. website http://www.advancecaredirectives.org.au/ accessed on 15 January 2013
- Queensland Health Advance Care Planning website http://apps.health.qld.gov.au/acp/HOME.aspx accessed on 15 January 2013
- Dementia - Diagnosis (Wikipedia)