FOI 24/25-0367 DOCUMENT 24
Younger Onset Dementia Snapshot SGP KP Publishing
Exported on 2024-10-18 03:15:03
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FOI 24/25-0367 SGP KP Publishing – Younger Onset Dementia Snapshot
Table of Contents
1 Peak body consulted when developing this Snapshot ……………………………………………. 4
2 What is Younger Onset Dementia? ………………………………………………………………………… 5
3 How is Younger Onset Dementia diagnosed? ………………………………………………………… 6
4 Addressing challenges to social and economic participation …………………………………. 7
5 Engaging with families and carers …………………………………………………………………………. 9
6 Common language and terminology …………………………………………………………………….. 10
7 How can I tailor a meeting to suit a participant living with younger onset dementia? 11
8 Helpful links for further information …………………………………………………………………….. 12
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This is a snapshot and is not designed to be a comprehensive guide. It provides general information about younger onset dementia for NDIA staff and partners and is not intended for external distribution. Each person with dementia is an individual and will have their own needs, preferences and experiences that will impact on the planning process and considerations for social and economic participation.
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1 Peak body consulted when developing this Snapshot
In developing this resource we consulted with Dementia Australia.
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2 What is Younger Onset Dementia?
Dementia is a term used to describe a collection of symptoms that are caused by conditions affecting the brain. It is not one specific condition.
Dementia can affect memory, thinking, behaviour, movement and the ability to perform everyday tasks, which in turn impact on a person’s social or working life.
Younger Onset Dementia (YOD) refers to any form of dementia that occurs in a person under the age of 65. Currently there are approximately 27,247[1] people with YOD in Australia. While dementia is less common in people under 65, it has been diagnosed in people in their 50’s, 40’s and 30’s. There are also rare occurrences of childhood dementia.
Alzheimer’s disease is the most common type of YOD, however Frontotemporal dementia, Alcohol-Related dementia and Vascular dementia are also commonly identified causes.
There is also a link between Down syndrome and dementia. Studies show that by the age of 40, almost 100% of people with Down syndrome who die have the changes in the brain associated with Alzheimer’s disease.
Dementia is a degenerative neurological condition for which there is currently no cure.
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3 How is Younger Onset Dementia diagnosed?
Diagnosing dementia in a younger person can be difficult. When symptoms first appear, GP’s and families may assume that they are caused by other factors like depression, stress, marriage breakdown or other physiological conditions and as such, it may take a number of years before relevant tests are carried out. In some cases it can take many years to get a diagnosis of YOD.
Diagnostic Process
Initial signs and symptoms are generally first reported to a GP who will begin to screen for relevant medical causes. This initial testing may include a medical/family history, physical examination, blood tests and neuropsychological or cognitive testing.
The diagnosis of dementia is undertaken by a process of elimination. As other medical causes, e.g. depression, stroke/brain injury, urinary tract infection, etc. are ruled out, a person is likely to be referred to a relevant medical specialist for more comprehensive assessment and testing. This may include brain imaging/scans, extensive neuropsychological or psychiatric assessment and laboratory testing.
Once this testing is complete, the specialist, usually a neurologist, geriatrician or neuropsychiatrist, will make a formal diagnosis.
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4 Addressing challenges to social and economic participation
People living with dementia may experience difficulties in a range of areas which could have a significant impact on their social and economic participation. For example:
Remembering, particularly recent events – a person may not remember to take their medication or attend an important appointment. They may forget who a person is, including a family member or support person. Assistive technology/memory aides might support participants to manage their daily routines for example, reminders about appointments, tasks to be completed. Making decisions – sometimes even decisions that appear fairly straightforward, such as what to wear or what to eat may become difficult. Developing routines that minimise everyday decisions at home and work can relieve stress for people living with dementia. Expressing their thoughts – a person may lose the ability to communicate their thoughts and needs to others. Understanding what others are saying – some people may find it difficult to process and understand what is being said by others. They may not respond at all, or provide a response that doesn’t fit the question, e.g. answering ‘yes’ to ‘what would you like to do today?’. Finding their way around – a person may become easily disorientated, even in familiar environments, and find it difficult to navigate to their intended destination e.g. returning home after going out for a short walk. Performing more complex tasks – tasks that have multiple steps, such as using a microwave, can become difficult for people. Similarly, responding to instructions with multiple steps, such as ‘get ready for a shower’, can also be difficult for people to process. Visual and audio prompts can be effective in managing complex tasks. Behavioural changes – a person may experience mood and behaviour changes which can include, but are not limited to, apathy, aggression, agitation, depression, disinhibition and hallucinations. Frontotemporal dementia is more common in younger people, and will often present as changes in ability to regulate emotions, difficulty responding appropriately in social settings, exhibiting disinhibited behaviour, and impaired judgement. Managing finances – a person may have reduced insight into the appropriateness of their purchases, e.g. buying another loaf of bread before using the one they purchased yesterday, or have difficulty understanding or performing financial calculations. Or indeed, understanding the value of money.
Considerations in Education and Employment
People diagnosed with younger onset dementia are often employed at the time of diagnosis. They may have financial responsibilities such as supporting a family or paying a mortgage. Deciding whether or not to continue their employment and whether to tell their employer about their diagnosis is very complex. There are no rules that will work for everyone. Factors that may affect a person’s decision include:
safety and duty of care the extent to which the symptoms affect their ability to do the job
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the pace at which the symptoms are progressing the support that is required (or likely to be offered) by their employer
Employers and work colleagues will require information, education and support to allow for adaptions in the workplace. This can be delivered through a participant’s plan to maximise successful social and economic participation.
Job customisation is also an important part of supporting a person to harness their skills while recognising certain tasks would induce stress or errors. Job customisation is an evidenced based methodology to ensure that participant’s abilities are matched to the jobs they are asked to perform.
Many people that decide to leave work still feel fit and capable to participate in community activities and may wish to consider volunteering roles. Some people may also wish to become a dementia advocate, to help raise awareness about dementia and share their story with others.
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5 Engaging with families and carers
It is also important to remember that caring for a person living with dementia can be physically and emotionally tiring and stressful. Families and carers can easily become isolated, particularly if they are unable to leave the person they are caring for. Supports for the person living with dementia that provide a ‘break’ for carers, such as respite or regular social support can assist carers and family members to manage their own health and wellbeing and help them to sustain their informal supports over a longer period of time.
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6 Common language and terminology
People with dementia may refer to their condition in different ways. Some terms about dementia may be upsetting or offensive to people with dementia and their families. It is important to check with the participant how they prefer to describe their condition. In addition you can confidently use the following terms;
Dementia, a form or type of dementia, symptoms of dementia, a person/people with dementia, a person/people living with dementia, a person/people with a diagnosis of dementia, a person with Younger Onset Dementia.
The term Younger Onset Dementia is seen as preferable to other terminology, including ‘early onset dementia’ as it specifically refers to any form of dementia where symptoms appear in people under the age of 65.
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7 How can I tailor a meeting to suit a participant living with younger onset dementia?
It is important to remember that everyone’s experience with dementia is very different, even if they share the same underlying cause, e.g. Alzheimer’s disease. Function can fluctuate on a regular basis. Even if a person presents well at their planning meeting, it may not be representative of their normal day to day function. People with dementia vary greatly in their level of insight. Some will be aware of their condition, and will be able to identify their deficits and challenges. Others, and this is more common, will have very little insight even at a very early stage. For these people, they will present a false picture of how they are going. It is important to know that this is not deliberate or contrived, but rather, they truly believe that nothing or little is wrong. Include the person with dementia in discussions and ensure they feel seen and heard. A person with dementia may not know what their needs and goals are, or be able to express them accurately. Informal supports, such as family and friends, play a critical role in supporting a person living with dementia. Primary carers and other family members often have a wealth of information regarding the person’s needs and goals and should be included in the planning process wherever possible. Confirm meeting details with the person’s primary carer or support person and confirm that they can attend the meeting with the participant as required. Travelling to appointments can be extremely stressful for a person living with dementia. Home environments for more complex meetings can be beneficial.
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8 Helpful links for further information
About Dementia
https://www.dementia.org.au/about-dementia/what-is-dementia
Types of Dementia
https://www.dementia.org.au/information/about-dementia/types-of-dementia
Dementia and Down Syndrome
https://www.dementia.org.au/about-dementia/types-of-dementia/down-syndrome-and- alzheimers-disease
Diagnosing Dementia
https://www.dementia.org.au/information/diagnosing-dementia
Dementia Friendly Language
https://www.dementia.org.au/resources/dementia-language-guidelines
YOD and the NDIS
https://www.dementia.org.au/resources/younger-onset-dementia-and-the-ndis
Employment and Dementia
https://www.dementia.org.au/about-dementia/i-have-dementia/employment-and-dementia
Dementia Advocates Program
https://www.dementia.org.au/about-us/dementia-advocates-program
[1] Dementia Australia (2018) Dementia Prevalence Data 2018-2058, commissioned research undertaken by NATSEM, University of Canberra
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