A stroll down memory lane
It sounds eerily close to the set of Peter Weir's 1998 film The Truman Show, but Swiss healthcare authorities have come up with a plan they believe will help dementia sufferers live more peaceful lives - they're planning a 1950's- style village where everything is just as the residents remember. The 150 patients will live in 23 houses, each built to replicate how people lived more than 60 years ago. The town, to be built outside Bern, will be complete with cinemas showing old films and shops selling familiar goods.
Doctors and nurses will watch over the facility while disguised as gardeners, hairdressers and shop assistants. Markus Vgtlin, the Swiss businessman behind the idea, had visited a similar facility in the Netherlands where patients were showing the benefits of living away from modern life. ''People with dementia are often restless and aggressive, but at Hogewey they were relaxed and content,'' he said. ''I want to emulate that contentment in Switzerland.'' People with dementia often have difficulty remembering events from the recent past, but have strong memories from decades before, Vgtlin said. Locals living near the proposed $25 million village, due to be completed in 2017, are calling it ''Dementiaville''
Matt Buchanan and Scott Ellis
Read more: http://www.smh.com.au/entertainment/movies/a-stroll-down-memory-lane-20120131-1qrcm.html#ixzz1l62T0ZMs
Denmark publishes report on the costs of informal care for people with dementia
Alzheimer Denmark, in cooperation with Pfizer Denmark, has co-authored a study on the costs of informal care for people with dementia. The aim of the study was to estimate the time spent by family and friends on informal care of persons suffering from dementia in Denmark and calculate the economic implications.
Results for a typical day show that informal care time was 4.97–6.91 hours for primary caregivers and 0.70–1.06 hours for other caregivers. This translates to daily costs of EUR 160-223 for primary caregivers and between EUR 23-34 for others.The report concludes that informal care delivered by family and friends is significant. The value of informal care constitutes an important part of the societal cost of dementia in Denmark, where some 70-80,000 people (1.3% of the population) live with dementia. The survey was conducted by consulting company COWI with funding from Pfizer Denmark. Results are based on the responses of 469 primary caregivers.
The full text of the report can be found at http://content.karger.com/ProdukteDB/produkte.asp?doi=10.1159/000333812
Alzheimer’s disease medication trial recruiting
PARTICIPATE TO LEARN MORE
Recruitment for trials of a new Alzheimer’s disease medication in New South Wales, Victoria, South Australia,
Queensland and Western Australia is currently underway. The new medication is designed to be taken in addition to
an existing donepezil (Aricept) medication program. These trials form part of an international study including
participants from Europe, the United States and Canada.
For the trial, researchers are seeking people over 55 years of age with a diagnosis of mild to moderate Alzheimer’s
disease. Participants must be on a stable dose of donepezil and have a carer able to attend clinical visits with the
participant. The trial will last approximately nine and a half months.
Participants will be given either a daily dose of the new drug or a placebo – a treatment with no effect. Participants
will undertake regular clinical visits in which the effects of the drug will be monitored. Recruitment will continue until the end of
March 2012. If you would like more information on this trial:
Summary information: Alzheimer’s Australia website
Study hotline: 1800 887 271
Are younger people with dementia and their carers being informed and supported appropriately at the time of diagnosis?
Alison Easton - Executive Officer, The Ella Centre and Chairperson, Younger Onset Dementia Association Inc.
Younger onset dementia refers to any dementia in a person with an onset of symptoms prior to the age of 65. Over the past 4 years The Ella Centre, which is a provider of aged and disability community care services in the Inner West region of Sydney, has provided services and support to 27 people with a primary diagnosis of younger onset dementia.
At the time of assessment the view was often expressed, by both the client and their carer, that although the time of diagnosis was obviously a very negative experience, it was worsened because they were provided with only limited information and support at the time of diagnosis from the medical professional they were consulting with and that referrals to other support services, for both the person with dementia and the carer, were decidedly lacking.
Let me set the scene with a scenario I have heard several times in the past few years:
For the past 1 -2 years your husband (aged in his 50’s) has been slowly changing. With some determined persuading from you, they eventually agree to see their local GP, who listens to the story and begins treatment for stress. Despite medication there is no improvement and in fact things worsen – the mood swings, forgetfulness and issues with communication. After buying a new puppy (so you have someone to love you) and a year of constant arguments, you eventually insist further investigation is required, so the GP sends your spouse to a specialist, who orders a range of test and scans that incorporate every letter of the alphabet CT, PET, MRI, SPECT etc. Case studies show a similar story – one where carers are left to find their own way through the maze after their spouse receives a diagnosis of younger onset dementia. There is little information provided about the disease and how it will progress and little input, at the initial stage of diagnosis, from the medical professional as to how they can access the information and support they desperately need, for both the person with the diagnosis and for themselves as a carer. It is only by pure chance that they may eventually stumble on someone who can head them in the right direction.
This anecdotal evidence led The Ella Centre, in early 2011, to investigate further whether the experiences of people with younger onset dementia, at the time of diagnosis, were as unsatisfactory as it appeared. Issue 45 of the Pfizer Health Report titled 'Dementia is everybody's business', published in 2011, stated that "63% of people are afraid of getting Alzheimer's or another form of dementia - a fear that is second only to the fear of having cancer (66%)". Given this, the delivery of a diagnosis of dementia would be expected to be made by a knowledgeable health care professional, who was able to deliver the diagnosis in an empathetic and supportive manner, whilst ensuring that appropriate information (verbal information that was supplemented by written materials) was provided to meet the needs of both the person with dementia and their carer, as well as providing opportunities for questioning. Evidence from other sources demonstrates that the nature of the dementia diagnosis delivery has been an issue that others have felt a need to investigate and comment on. On 20 October 2006 Alzheimer's Europe released a paper detailing their position on the disclosure of the diagnosis of dementia to people with dementia. This paper was based on a carers survey, carried out by Alzheimer Europe, involving over 1,000 carers of people with Alzheimer’s disease. Their position paper concluded with the statement that "Alzheimer's Europe emphasises the need to provide people with dementia and carers with information about the disease, treatment and services at the time of diagnosis, and to ensure that every person receiving a diagnosis of dementia is given the contact details of the national and local Alzheimer associations" In Alzheimer’s Australia Paper 10, published in March 2007, titled 'Early Diagnosis of Dementia', Alzheimer's Australia stated their view that, amongst other points, they believed everyone has the right to : § "Sensitive communication of a diagnosis with appropriate explanation of symptoms and prognosis,
§ Sufficient information to make choices about the future". In 2008 the Alzheimer's Association in America drafted a statement called 'principles for a dignified diagnosis' following the report Voices of Alzheimer’s Disease: A Summary Report on the Nationwide Town Hall Meetings for People with Early Stage Dementia. In this the Alzheimer’s Association identified diagnostic challenges and dissatisfying interactions with the medical community as two major challenges articulated by people living with the disease. In this the Alzheimer’s Association identified diagnostic challenges and dissatisfying interactions with the medical community as two major challenges articulated by people living with the disease. These principles are their insights on how to make that experience better and include points such as:-
· "Deliver the news in plain but sensitive language.
This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel. · Give me tools for living with this disease.
Please don’t give me my diagnosis and then leave me alone to confront it. I need to know what will happen to me, and I need to know not only about medical treatment options but also what support is available through the Alzheimer’s Association and other resources in my community". In September 2010 Dr Jill Phillips (University of Newcastle) Professor Dimity Pond (University of Newcastle) Dr Allan Shell (University of New South Wales), in their publication Quality Dementia Care Standards: No time like the present: the importance of a timely dementia diagnosis stated that: " While circumstances differ from person to person, everyone has the right to:
••A thorough and prompt assessment by medical professionals
••Sensitive communication of a diagnosis with appropriate explanation of symptoms and prognosis
••Sufficient information to make choices about the future After reviewing information from papers, reports and research as to what constitutes an acceptable diagnosis delivery, it was decided to look into whether, at the time of diagnosis, younger people with dementia and their carers, living in Sydney, had received their diagnosis in a manner that was consistent with the following essential elements for a dignified delivery of a diagnosis:
1. Sensitive delivery of the diagnosis 2. Clear verbal information on the nature of the illness and the expected progression of the disease 3. Written information that could be taken away and read later to provide further understanding 4. Referrals to health services / agencies for ongoing management of the disease 5. Information on community support services that could assist the person with dementia 6. Information on community support services that could support the carer A survey was designed that would record the experiences of both the person with dementia and the carer at the time of diagnosis, to discover what was happening when people were receiving this diagnosis of younger onset dementia. For many, reaching this point of diagnosis had taken an extended period of time and this appointment with their health professional was to be a turning point in their lives.
Our survey aimed to determine whether this diagnosis was delivered in a sensitive manner, with adequate verbal and written information for both the person with dementia and their carer, so that their distress at the diagnosis wasn't increased by insensitivity, a lack of information and feelings of isolation due to an apparent lack of support options available.
23 surveys were sent to people with younger onset dementia and their carers who were known to me through my work at The Ella Centre or through the Younger Onset Dementia Association. Of these, 17 were returned, providing a return rate of 74%.The average age of the respondents who had been diagnosed with younger onset dementia was 57. The average timeframe to achieve their diagnosis, from the onset of symptoms, had been 1.5 years. The statistical responses were as follows: REQUIREMENTS of a QUALITY DIAGNOSIS
YES
NO
Sensitivity
71%
29%
Clear verbal information 76%
24%
Written information 35%
65%
Information on the progression of the disease
47%
53%
Health referrals
53%
47% Community support service information 40%
60%
Of the 17 people, 2 had received their diagnosis from a psychiatrist, 4 from a geriatrician and 11 from a neurologist. Of these 17 health professionals delivering this life changing diagnosis, only the 2 psychiatrists and 2 of the neurologists provided a comprehensive verbal diagnosis that was backed up by written information about the disease that could be taken and read later. REQUIREMENTS of a QUALITY DIAGNOSIS
GERIATRICIAN
PSYCHIATRIST
NEUROLOGIST
Sensitivity
100%
100%
80%
Clear verbal information
100%
100%
72%
Written information
25%
100%
27%
Information on the progression of the disease
25%
100%
50%
Health referrals 25%
50%
60%
Community support service information 50%
0%
20%
Carer support service information
25%
0%
9%
Although mindful that a degree of recall bias would occur and that recall may be affected by the time elapsed from the diagnosis to the time of the survey, the memories for the carers were still so pronounced that it would seem there is a high level of validity to the findings. Even though the number of survey respondents represents a very small snapshot of people living with younger onset dementia, I feel it is still possible to draw a number of conclusions from these results, which highlight areas for improvement. 1. The provision of written material, as follow up reading and with numbers to call for support and further information at a later date, is limited. 2. There is a distinct lack of information provided on the manner in which the disease may progress. 3. Referrals to other health services needs to be improved. 4. Information regarding community support services, for both the person with the diagnosis and the carer, is largely ignored by health professionals when delivering the diagnosis 5. Overall, neurologists faired poorly when compared with geriatricians and psychologists I leave you with the words of Harvey Williams Cushing, M.D. (April 8, 1869 - October 7, 1939), who was an American neurosurgeon and a pioneer of brain surgery who stated that: "A physician is obligated to consider more than a diseased organ, more even than the whole man - he must view the man in his world"
