YOD in the Netherlands, by Keith Oliver

Christian Bakker is the Program Manager, Florence Centre for Specialized Care in Young Onset Dementia and Healthcare psychologist, Department of Primary Care and Community Care, Centre for Family Medicine, Geriatric and Public Health, Radboud University Nijmegen. A few weeks ago I heard him speak about services developed in The Netherlands to support people living with Younger Onset Dementia at the Florence Centre for Specialized Care in Young-Onset Dementia, as well as the underlying findings from the NeedYD-study.

Keith OliverBy Keith Oliver (additional points by Hellen Riley), 27 April 2013.

Keith Oliver is a friend , and wrote this report about the session, and with his permission, it is my post for today. I have no idea how he manages to write such a detailed report, but know like me he as a lot of motivation and support to continue to contribute and stay engaged. It is wonderful we can all lean on each other for support and friendship. Thanks Keith.


Whilst statistics connected to dementia need to be treated with some degree of caution due to their accuracy the following are of some interest and do raise a series of questions:-

  • Approx. number of people with a diagnosis of YOD in Australia – 24,000 (Alzheimer’s Australia)
  • Approx population of Australia – 23 million
  • Approx. number of people with a diagnosis of YOD in South Australia –1,700 (Alzheimer’s Australia)
  • Approx. population of South Australia – 1.65 million
  • Approx number of people with a diagnosis of YOD in UK – 64,000 (SCIE)
  • Approx. population of the UK – 63.1 million
  • Approx. number of people with a diagnosis of YOD in Kent – 520550 (KMPT)
  • Approx population of Kent 1.57 million

Young Onset Dementia conference on 14 March 2013 in Adelaide, South Australia

Venue – Dementia Training Study Centre (South Australia & Northern Territory), Alzheimer’s Australia SA, Adelaide, South Australia

Speaker – Christian Bakker, programme manager at the Florence Centre for Specialized Care in Young Onset Dementia and Healthcare psychologist, Dept of Primary Care & Community Care, Centre for Family Medicine, Geriatric Care & Public Health, Radboud University, Nijmegen, The Netherlands.*

*Christian was also speaking at the Alzheimer’s Australia National summit on YOD in Melbourne shortly after this event.

The audience – there were approx. 30 -40 in the audience, all of whom were either healthcare professionals, Alzhiemer’s Australia staff or from local care homes – plus Kate Swaffer, Peter Watt, and Rosemary, Hellen and myself were the only ones directly affected by dementia.

The talk – This is my summary of an outstanding presentation written a month after the event from notes taken by myself at the event and checked through by my wife, Rosemary and Hellen our close friend.

Section 1 – Service provision in YOD – towards an integrative approach to caregiving

  • Started in 1994 @ the medical centre within the Radboud University, Nijmegen
  • Find that 6- 9% of those with dementia are below age of 65, i.e. Young Onset
  • Found that because group is a minority there were poor levels of support services for YOD
  • Known higher risk factors for YOD – obesity, diabetes, cardiovascular disease
  • A national taskforce on YOD was set up by the care organisation and Alzheimer’s Association Netherlands which then introduced a national care programme, appropriate funding and guidelines for best practice for those caring for people with a YOD diagnosis. Their program was published in 2004
  • This began with a needs analysis – 215 PWD (people with dementia – YOD) and carers visited the centre every 6 months and discussed issues. 100 were attending memory clinics and 115 came via national taskforce organisation.
  • Now the taskforce is working with the UK, Norway and France to extend this work – how in UK??????

Section 2 – Needs of those with YOD

  • Investigating the cause of the condition
  • Study found that overall 24% of needs were unmet
  • Drilling into these figures – 46% reported lack of meaningful daytime activities
  • 37% said they lacked social company
  • 37% had problems with eyesight or hearing
  • 23% felt they lacked information on YOD
  • 18% felt levels of psychological distress
  • There were others of smaller % that I didn’t have time to note
  • Unmet health care needs of the pwd and carer were found to be different
  • Unmet care needs led in many cases to increased behaviour problems and issues
  • The increase in unmet needs/decrease in care-giver health related to their quality of life – anxiety, depression, social functioning and can lead to behaviour problems, a precursor to institutionalisation

Section 3 – Location of the work

  • Work is based at the Florence Centre @Nijmegen University and the Mariahoeve Centre for specialised care in YOD where science meets clinical practice – 50% research and 50% clinical practice. Also has a memory clinic which specialises in YOD

Section 4 – Raising awareness

  • Problems experienced with GP failure to recognise symptoms of YOD as they may have seen very few cases this can then lead to frustration and anger in the patient
  • In Netherlands – average of 4.4 years to diagnose Young Onset; 2.8 years for Late Onset
  • Need to raise awareness due to lack of understanding and knowledge
  • Using the media to raise awareness. Includes periodic interviews, editorials, coverage of events
  • Information and support through the phone and/or email
  • Awareness raising programme/interviews for professionals at Dementia cafe meetings
  • The centre has devised a programme of training for health professionals

Section 5 – management of YOD

  • Undertaken within Florence Centre YOD care programme which has been rolled out nationally in the Netherlands
  • The package/care plan is based upon one of four clusters of care
  • Each cluster depends upon the main need – e.g. cluster 2 (or 3) is apathy – both in the case of the pwd and the family, cluster 4 is where the pwd functioning varies greatly during the day, e.g. Parkinson’s and DLB
  • Each person has a case manager who stays with the pwd right through from immediately after diagnosis which allows a relationship to be established and developed. It also allows access to appropriate, personalised support. They are NOT nurses, but specialised social workers or welfare. They focus more on psycho-social aspects of the condition/disease. These case managers all have YOD training within their initial and on-going courses.
  • At the first meeting a needs analysis is included which leads to access to the appropriate cluster of care
  • There is a need to empower the pwd and the carer to make good choices – e.g. buying own care from their individual delegated money
  • This case management is designed to delay institutionalising the pwd
  • Each case manager has approx. 30 pwd on their case load
  • Problems are often compounded when delays in diagnosis is followed by delays in accessing services which are relevant to the individual with YOD

Section 6 – Supporting families affected by YOD

  • Courses are run for pwd and carers
  • Sometimes people are reticent to access this support service or others which can cause problems later
  • There’s an open support group which meets every 6 weeks
  • Individual counselling
  • The support groups – 6/7 people in each group. Meet with others who have YOD, mix of talking and physical exercise both of which combine to reduce mild depression. Subjects covered include – themes taken from literature, loss of identity, sense of self, social aspects. They also give info about the disease and care options, mobility, intimacy, social company, communication
  • Organise social events – bringing together informally pwd, professionals, family members, carers. These events are at varying times – evenings, weekends, BBQ/tea, non demanding environment, protected, safe and FUN
  • Community support – at a day care centre which helps pwd and gives respite for carers. The day care centre has flexible operating hours, highly trained staff, program to meet the needs of those with YOD, e.g. work related activities, household tasks, cooking, handiwork and practical hobbies
  • Fitness groups to enhance the physical health and results often in improved cognitive function, reduced behaviour issues and retain the best possible mobility for longer, e.g. swimming and physio
  • Art therapy – shown that non verbal therapy can really help many with YOD
  • Music therapy – as the art but can also help with later stages of the dementia. Creative skills are often only affected later in the disease’s course
  • The centre also has overnight and weekend stay service plus acute intervention if the carer becomes ill
  • Offers respite care and detailed observation of symptoms and behaviours
  • This hotel style accommodation for overnight/weekend stay is for emergency care, respite or to observe behavioural symptoms and is intended to further delay institutionalisation
  • When community care is no longer appropriate the centre offers YOD residential facility/care
  • On average they find it’s 9 years from first noted symptoms to care home for YOD (4 years for LOD)
  • Apathy is the biggest risk resulting in needing a care home and is the biggest strain on the carer
  • Lowest risk for needing a care home – where the pwd has : a female caregiver, spousal caregiver, high sense of compassion from their caregiver, Frontal Temperal Dementia
  • We then had a detailed guide to the residential facility – it’s for those with the later stages of YOD and is usually for approx 3 + years. The facility is small scale living within a larger facility, e.g. 6 bedrooms around a common living room/kitchen. During this time the care program continues. Low use of anti-psychotic drugs and NO physical restraints.
  • Final thought I noted – by this time I was getting very tired, was that on average it takes 16 years for the whole “journey”/process to unfold from first signs of YOD to death.

A very interesting talk which illustrated some very good practice some of which I have seen in place locally in Kent either from our KMPT Service User Network or the relevant charities – e.g. EKIDS (East Kent Independent Dementia Support), Age UK or the Alzheimer’s Society. However, there was much to consider which we currently do not have available and I look forward to attending the Young Onset Dementia conference entitled Younger People Living with Dementia – Bringing Care Together being organised by University College London, scheduled for 28 June in London.  One of the speakers is Professor Raymond Koopmans, a colleague of Christian Bakker and I hope that I get the opportunity to ask him questions around the work outlined in this piece of writing.”

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