Younger Onset Dementia Assosciation Inc



Residential Care – not where we want to end up?

On 26 February, the UK Alzheimer’s Society published a report entitled: "Low expectations - Attitudes on choice, care and community for  people with dementia in care homes". The report provides new evidence on the key issues affecting people with dementia living in care homes. It summarises evidence from surveys of family members, care home staff and people with dementia about their views on are in care homes.

"Low Expectations" finds evidence of a deep-seated pessimism about life in care homes. Only 41% of relatives surveyed by Alzheimer’s society reported that their loved ones enjoyed good quality of life. Despite this, three quarters of relatives would recommend their family member’s care home. The report also reveals the severe image crisis facing the care sector. According to a poll commissioned by the charity, 70% of UK adults say they would be fairly or very scared of going into a care home. In addition, two thirds do not feel the sector is doing enough to tackle abuse in care homes.

The Society argues that public attitudes and scepticism about whether people with dementia enjoy a good quality of life in a care home is leading to a failure to drive up standards of care. Jeremy Hughes, Chief Executive at Alzheimer’s Society, said: "When you walk into an  excellent care home it’s full of warmth, activities and interaction. But between these best examples and the worst, which often dominate headlines, there is a forgotten scandal of people with dementia who are failed and left living a life that can only be described as 'OK'.

"Society has such low expectations of care homes that people are settling for average. Throughout our lives we demand the best for ourselves and our children. Why do we expect less for our parents? We need the government and care homes to work together to lift up expectations so people know they have the right to demand the best."

The report is available on the Alzheimer's Society


Comment on this article from Alison Easton, YODA Chairperson

In NSW one of the greatest issues facing people with younger onset dementia is the lack of suitable accommodation once residential care becomes essential. Through persistent lobbying of the State Government over the past 5 years we have managed to gain recognition for the need for community care services which are now being very slowly rolled out across the state. However the issue of residential care is still being largely ignored as again it fits into "no man’s land, Is it a Commonwealth Government issue, as it concerns residential care for someone with dementia OR is it a State Government concern, as it involves residential care for a person under 65? No one seems able to, or wants to, answer that question. 

Many of the carers who have contacted the Association in recent times have gone through the agonising decision to place their family member in residential care, only to find that the facility cannot cater for them due to their high level of physical mobility and in fact, after only a few months, they are facing "expulsion" as they are a risk to the frail, elderly residents. Whilst carers obviously have no wish to place the other residents at risk, what are they meant to do with their family member who has dementia? At present the only option given for those in residential care is to agree to a drug regime that renders them totally incapacitated! What quality of life does that provide? I have heard from many carers about the negative experiences of their family member when placed in residential care (including facilities that claim to be experienced in dealing with younger people) and the resulting level of distress for the carer as well.

What is needed are smaller facilities with only a few residents, similar to the group home model, but of course that is a costly model and which Government Department is going to be willing to fund that level of care?

How can we make this happen? I would welcome any suggestions!


Art project for people with dementia

Alzheimer Portugal has launched a new intergenerational project called "Spaces of Memory" that aims to boost inclusion of people with Alzheimer's disease in the local community. The project, which is managed by Dr. Carlos Garcia, takes place in Alzheimer Portugal's day care centre and pairs people with dementia with students from the local College of Arts Maria Amalia. The pairs are creating visual art forms based on meaningful moments in their lives. The resulting art works will become permanent fixtures in the centre, promoting expression, creativity and sharing among generations. They will also serve to enhance the physical space of the centre, both inside and outside the building. "Spaces of Memory" is an on-going project and can be followed on the

With thanks to Azheimers Europe March 2013 Newsletter


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:



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



 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. By now you are convinced your spouse has a brain tumour and won’t see next Christmas. Finally, after the specialist has examined all these test results, the time arrives when you accompany your spouse to receive the diagnosis  – “Dementia” is the pronouncement. The specialist comments that you are young to have this illness, rattles off some technical jargon, says he will send your GP a letter and waves you farewell. Is that it? What does that mean? Frontal what? Lewy who? What does this mean for your future retirement plans? Does this disease progress and will the symptoms get worse? What help is available for your spouse? Where do you, in your new role as a carer, go now for information and support?

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:









Clear verbal information



Written information



Information on the progression of the disease





Health referrals 




Community support service information




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.












Clear verbal information





Written information





Information on the progression of the disease





Health referrals




Community support service information




Carer support service information





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"
























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