Difficulty Completing Normal Tasks
A subtle shift in the ability to complete normal tasks may indicate that someone has early dementia. This usually starts with difficulty doing more complex tasks like balancing a checkbook or playing games that have a lot of rules.
Along with the struggle to complete familiar tasks, they may struggle to learn how to do new things or follow new routines.
Search Strategy And Selection Criteria
References for this Review were identified through searches of PubMed with the search terms young onset, early onset, presenile, and dementia from 1990 until April, 2010. Articles were also identified through searches of the authors own files. Only papers published in English were reviewed. The final reference list was generated on the basis of originality and relevance to the broad scope of this Review.
Dementia In Younger People
People whose symptoms started when they were under the age of 65 are often known as younger people with dementia or as having young-onset dementia. This is not for a biological reason, but is based on the fact that 65 was the usual age of retirement for many people.People sometimes use the terms early-onset dementia or working-age dementia. This information uses the term young-onset dementia.
Dementia is caused by a wide range of different diseases. This is similar for younger and older people , but there are important differences in how dementia affects younger people. These include the following:
- A wider range of diseases cause young-onset dementia.
- A younger person is much more likely to have a rarer form of dementia.
- Younger people with dementia are less likely to have memory loss as one of their first symptoms.
- Young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance.
- Young-onset dementia is more likely to be inherited this affects up to 10% of younger people with dementia.
- Many younger people with dementia dont have any other serious or long-term health conditions.
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The Impact Of A Younger Diagnosis
Getting a diagnosis of dementia is terrible, but its arguably worse for someone like Mr J who is still considered young at only 58 years old.
But it also took five years to get this diagnosis, because most people, including healthcare professionals, dont expect that dementia can happen in younger people.
In Australia, there are about 27,000 people with a younger-onset dementia which refers to a dementia where symptoms come on before the age of 65.
Unlike dementia that occurs in older people, which often starts with memory problems, YOD may start with depression, psychosis, visual problems and unusual behaviours.
It can take up to five years to get a diagnosis, and during this period of diagnostic delay, a person might see a neurologist, psychiatrist or psychologist.
Because people with YOD are still young, they are often working, looking after children and possibly older parents. Theres a range of psychosocial issues totally different to those of older people who get dementia many are often retired and may have other medical conditions as well as other issues.
So, the distress and challenge of the assessment as well as the delay to diagnosis can have specific real-world ramifications for someone with YOD like accessing superannuation early, work difficulties and other potential financial issues.
The Short Answer To A Big Question
On this page we will discuss the development of an Alzheimers / dementia Life Expectancy Calculator, but lets first address the question most people ask after receiving the diagnosis of an incurable disease: How long do I have left to live? With dementia, the answer differs depending on the type. By far the most common form of dementia is Alzheimers disease, and the average life expectancy after diagnosis is 10 years. Other dementias have different life expectancies. Someone with vascular dementia lives for about five years after diagnosis. Someone who has dementia with Lewy bodies will typically live for six to twelve more years.
Average life expectancies for the most common types of dementia are as follows:
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Why Knowing Life Expectancy Is Useful
Knowing what to expect, including life expectancy helps with planning. Someone predicted to survive for five or six years, as opposed to two years, will want to make more extensive plans, including getting an estate in order, activity planning, and budget. Knowing how quickly the disease is expected to progress symptomatically can impact care decisions. If the disease is predicted to come on very quickly, for example, then skipping traditional assisted living and looking into memory care or a nursing home might be the best option.
Knowing when full-time care becomes a requirement, either at-home or in a memory care residence, is especially useful given the high cost of care. It is estimated that 50% of nursing home residents have some level of dementia and over 60% of nursing home residents care is paid for by Medicaid. Medicaid eligibility is complicated, and families can spend up to 5 years waiting for a loved one with dementia to become Medicaid-eligible. Therefore, knowing how soon care is required can make a huge financial difference.
Contribute anonymously to our dementia life expectancy database. Start here.
What Is Young Onset Dementia
Dementia is a degeneration of the brain that causes a progressive decline in peoples ability to think, reason, communicate and remember. Their personality, behaviour and mood can also be affected. Everyones experience of dementia is unique and the progression of the condition varies. Some symptoms are more likely to occur with certain types of dementia.
Dementia is described as young onset when symptoms develop before the age of 65, usually between 30 to 65 years of age. It is also referred to as early onset or working age dementia, but these terms can cause confusion. Early onset can be interpreted as the early stages of dementia and working age is now less defined as retirement age is more flexible.
As dementia is frequently, and wrongly, thought of as a condition that is just associated with old age, the early symptoms of young onset dementia are not always recognised and may be attributed to other causes including depression, stress, menopause, physical health problems and relationship issues. This can lead to a significant delay in getting an accurate diagnosis and access to appropriate support. This can have a negative impact on not just the person with dementias life but also the whole family.
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The Needs Of People Affected By Young Onset Dementia
People living with young onset dementia and their family members state that they need:
- early recognition of the signs and symptoms suggestive of dementia
- accurate and timely diagnosis
- awareness of their condition, especially from health and social care professionals
- specialist information at the time of diagnosis
- identification of a person who specialises in young onset dementia to support them and their family to work on a support plan to meet their needs
- better communication between agencies
- access to a specialist helpline
- support around employment issues
- emotional support and relationship counselling
- age-appropriate information, advice and support to stay active and maintain independence
- age-appropriate meaningful occupation and activities
- to feel connected to others
- peer support groups
- support to retain a life beyond caring
Early recognition and timely accurate diagnosis of dementia, combined with appropriate specialist support, can reduce the distress experienced by the person with young onset dementia and their family.
If you have any cause for concern, it is a good idea to make an appointment to see a doctor. Seeing a doctor early on can reduce anxiety and worry and provide you with answers.
What Changes Can I Expect
- The first signs of young-onset dementia can be similar to those of late-onset Alzheimer’s disease, although the sequence in which signs appear varies from person to person. Typical signs include:
- Personality changes, such as abruptness and insensitivity
- Frequent lapses of memory, particularly involving recent memories
- Forgetting appointments or the names of colleagues at work
- Unsettling moments of disorientation in previously familiar places
- Being unable to find the way home
- Becoming confused about familiar tasks such as handling money or placing a call
- Difficulty finding the right words
- Difficulty with voluntary movements or physical coordination
- Struggling to learn new things and adapting to changes at home or at work
- Losing interest in activities that were enjoyed previously
- Withdrawing from social contact
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Prevalence Of Young Onset Dementia
- In 2014, it was estimated that there were 42,325 people in the UK with a diagnosis of young onset dementia. They represent around 5% of the 900,000 people living with dementia
- The actual figure is likely to be higher because of the difficulties of diagnosing the condition and might be closer to 6-9% of all people living with dementia
- Prevalence rates for young onset dementia in black and minority ethnic groups are higher than for the population as a whole. People from BAME backgrounds are less likely to receive a diagnosis or support
- People with a learning disability are at greater risk of developing dementia at a younger age. Studies have shown that one in ten develop young onset Alzheimers disease between the age of 50 to 65. The number of people with Downs syndrome who develop Alzheimers disease is even greater
Coming To Terms With Their Condition
A dementia diagnosis at any age can be devastating and will require a period of acceptance and adjustment for the person diagnosed and those around them. Someone with young onset dementia is likely to need extra help to deal with worries about finances, dependants and their life expectations.
This is where the information and support provided by organisations such as Alzheimers Society, Young Dementia, Dementia UK, and the NHS really come into their own. Talking therapies can be particularly helpful at this point, as can connecting with others with the same condition via support groups and online forums These allow people to share their feelings and experiences and know theyre very much not alone.
Dementia and work
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Common Types Of Dementia In Younger People
There are differences in the types of dementia commonly diagnosed in younger people with dementia compared to those of an older age.
- Alzheimers disease is the most common form of dementia in younger people, accounting for around a third of younger people with dementia, in comparison to about 60% in the older age group
- Vascular dementia is the second most common form of dementia in young people. Around 20% of younger people with dementia have vascular dementia
- Around 12% of younger people with dementia have frontotemporal dementia, compared with just 2% in older people. It most commonly occurs between the ages of 45-65. In about 40% of cases there is a family history of the condition
- Korsakoffs syndrome around 10% of dementias in younger people are caused by a lack of vitamin B1 , most commonly associated with alcohol abuse
When Dementia Strikes At An Early Age
Dementia in a person in their 30s, 40s or 50s poses special challenges, starting with getting a diagnosis.
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Many people arent overly concerned when an octogenarian occasionally forgets the best route to a favorite store, cant remember a friends name or dents the car while trying to parallel park on a crowded city street. Even healthy brains work less efficiently with age, and memory, sensory perceptions and physical abilities become less reliable.
But what if the person is not in their 80s but in their 30s, 40s or 50s and forgets the way home from their own street corner? Thats far more concerning. While most of the 5.3 million Americans who are living with Alzheimers disease or other forms of dementia are over 65, some 200,000 are younger than 65 and develop serious memory and thinking problems far earlier in life than expected.
Young-onset dementia is a particularly disheartening diagnosis because it affects individuals in the prime years, Dr. David S. Knopman, a neurologist at the Mayo Clinic in Rochester, Minn., wrote in a . Many of the afflicted are in their 40s and 50s, midcareer, hardly ready to retire and perhaps still raising a family.
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Limited Use Of Community Services
It is repeatedly assumed that people with dementia cannot benefit from physical rehabilitation services because they cannot learn new behaviours or relearn old ones. The assumption that people with dementia cannot benefit from these services can result in a denial of care that would help maintain or improve the persons functioning. It is not clear, however, whether people with early-onset dementia are more likely than those with late-onset dementia to need physical rehabilitation services or to be denied these services because of the assumption that they cannot benefit or for any other reasons that stereotype dementia as merely getting old.
A non-pharmacological strategy that could help people with early-onset dementia adapt formal community services is by introducing meaningful Montessori activities such as games, puzzles, exercise, music singing and listening, which are inexpensive, in order to improve mood and self-esteem for a group at risk of relapsing into depression. These activities help them to be active and motivated and could be part of a friendly, informal setting where dementia support groups , caregivers and the patients meet to gather personal history and share information and experiences. According to the Senses Framework, events like these will foster a sense of achievement at the organisational level by recognising that practical work is a key aspect to caring for the whole person.
Implication for early-onset dementia practice using Senses Framework
What Are The Symptoms Of Younger Onset Dementia
The symptoms of dementia are similar no matter what age they start. They include:
- memory loss that interferes with daily life
- withdrawing from friends and family
- losing the ability to think clearly or make judgements
- language problems
- changes to behaviour
Many conditions can produce symptoms that are similar to dementia, such as vitamin and hormone deficiencies, depression, medication, infections and brain tumours.
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Can You Really Get Dementia In Your 30s Or 40s
The Alzheimers Society hopes increasing evidence of the numbers of people with early onset dementia some in their 30s and 40s will lead to better diagnosis
If youve watched a parent or grandparent go through the unforgiving torment of dementia, or visited relatives in a care home where other residents have the disease, you may associate it mainly with the frail and elderly.
But new figures show early onset dementia affects far more people in the UK than had previously been thought with the increase attributed not to a greater prevalence of illness but the fact that younger people may either be too frightened to seek help, or are turned away or misdiagnosed when they do. Thousands of those affected are in their 40s and more than 700 are in their 30s.
People are reluctant to go to their GP because theyre afraid of what might happen, explains George McNamara, head of policy at the Alzheimers Society. These are people whove got families and mortgages to pay. The stigma which still exists around dementia can mean they may have to give up working unnecessarily because of a lack of understanding about the condition. Accessing things like travel insurance might become difficult. People with dementia tell us they often lose friends.
Diagnosis Of Young Onset Dementia
- On average, a person may see between two and five different consultants before a diagnosis is made
- The average time to diagnosis is 4.4 years in younger people compared to 2.2 years for people aged over 65
- In England in August 2018, the estimated dementia diagnosis rate for under 65s was 41%, compared to 68% for people aged over 65
- Awareness amongst GPs is still relatively low and when people are younger, symptoms are often attributed to stress, anxiety, depression or menopause
- People who are under 65 are more likely to be diagnosed with a genetically inherited form of dementia or a rarer dementia that can be difficult to recognise
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Young Onset Vs Early Stage
It’s important to know that term “young onset dementia” does not mean the early stage of dementia. While most people diagnosed with young onset dementia are likely experiencing mild symptoms that indicate they are in the early stage, “young onset” and “early stage” have different meanings. A 57-year-old living with young onset dementia could already be in the late stage, while a 80-year-old just diagnosed with dementia might be in the early stage.
It’s also important to note that young onset dementia encompasses all types of dementia. If a person is diagnosed with Alzheimer’s disease â the most common type of dementia âunder the age of 65, then that person can be said to have young onset Alzheimer’s disease. Likewise, if a person is diagnosed with frontotemporal dementia under 65, then that person has young onset frontotemporal dementia.
However, each person living with young onset dementia has their own preferred term to describe their dementia â ask them what they prefer!
Resources For Financial And Legal Support
Being diagnosed with dementia at a younger age is likely to have a considerable effect on someones income, their current commitments particularly if they have dependents to support and financial planning for the future. This is particularly so if they give up work earlier than planned. If youre concerned about the impact of your diagnosis on your income, the following may help: Citizens Advice and MoneyHelper. MoneyHelper brings together the support and services of three government-backed financial guidance providers: the Money Advice Service, the Pensions Advisory Service and Pension Wise, making it easier to find the help you need, all in one place. The Pathways through Dementia website is another a useful source of free, accurate legal and financial information.
Alzheimers Society, the UKs leading dementia charity are one of AXA UKs chosen charity partners. Through our partnership we will be raising money to fund vital research which was forced to stall because of the pandemic. We are now helping dementia research get back on track by supporting 5 incredible projects funded by some of the biggest names in the field.
The content in this article has been developed with Alzheimers Society. For further information and to find out how you can access support you can visit alzheimers.org.uk. To find out more about Corporate Responsibility at AXA UK, visit our CR page here.
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