The Stigma Of Young Onset Dementia
Because dementia is so strongly associated with older people, younger people can feel extra stigma and discrimination. A younger person may not be believed when they say they have been diagnosed with dementia. This attitude can add to a persons problems. For example, one woman with dementia reported being laughed at when she told others she had dementia . Another woman with dementia who talks to medical students about her condition as part of their training says, The first barrier you meet is that people dont believe that you can have dementia if you can still function. To others, these women seemed too young and too well to have dementia, and so they did not get the courtesy and respect they deserved. Later, a younger person may feel and look out of place in a care home where most other people are in their 80s and 90s.
Terry Pratchett talks about the stigma of a dementia diagnosis in a video from the Alzheimers Society.
What Are The Symptoms Of Early
For most people with early-onset Alzheimer disease, the symptoms closely mirror those of other forms of Alzheimer disease.
Withdrawal from work and social situations
Changes in mood and personality
Severe mood swings and behavior changes
Deepening confusion about time, place, and life events
Suspicions about friends, family, or caregivers
Trouble speaking, swallowing, or walking
Severe memory loss
The Seven Stages Of Dementia
One of the most difficult things to hear about dementia is that, in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down. The cognitive decline that accompanies dementia conditions does not happen all at once – the progression of dementia can be divided into seven distinct, identifiable stages.
Learning about the stages of dementia can help with identifying signs and symptoms early on, as well as assisting sufferers and caretakers in knowing what to expect in further stages. The earlier dementia is diagnosed, the sooner treatment can start.
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How Common Is Dementia In Adults Under 65
Dementia can affect people as young as 30, although this is extremely rare. Most younger people with dementia are middle aged: in their 50s and early 60s. The term young onset dementia, or ‘early onset dementia’, or ‘working life dementia’ refers to people diagnosed with dementia under the age of 65.
You cant have dementia, youre too young.
A GP quoted in an Alzheimers Society report
In 2010 there were thought to be 64,037 people under 65 with dementia in the UK compared with just 16,737 in 1998. The majority of those affected in this younger age group 70 per cent are men. Younger people with dementia make up 8 per cent of the total number of people with dementia .
The chances of developing dementia before 65 are relatively small. Men aged between 30 and 59 have a 0.16 per cent chance for women it is 0.09 per cent. The chances increase slightly once a person reaches 60. Men aged between 60 and 64 have a 1.58 per cent chance of developing dementia for women it is 0.47 per cent. The chances of developing dementia are highest for people between 90 and 94 .
You’ve Been Experiencing Memory Changes
If you’re developing dementia, one of the first symptoms you might experience is a change in your ability to remember things, which might include forgetting what you just got up to do, or losing your train of thought mid-sentence.
“Signs of early-onset dementia include short-term memory changes, often described as an ‘inability to keep a thought in your head,'”Dr. Faisal Tawwab, MD, tells Bustle. So, if your words escape you, or you’ve suddenly become super forgetful, take note.
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The Various Causes Of Early
The Dutch study found that overall, Alzheimers disease was the most common cause of young-onset dementia. But when symptoms developed before age 50, early-onset Alzheimers was a less likely explanation than two other causes: vascular dementia and frontotemporal dementia.
Vascular dementia results from a blockage or injury to blood vessels in the brain that interfere with circulation and deprive the brain of oxygen and nutrients. Its most common symptoms, in addition to memory problems, are confusion, difficulty concentrating, trouble organizing thoughts or tasks, and slowed thinking.
In frontotemporal dementia, portions of the brain that lie behind the forehead and ears shrink, resulting in dramatic personality changes, socially inappropriate or impulsive behavior and emotional indifference. Movement and memory problems typically develop later in the course of the disease. According to the Mayo Clinic, frontotemporal dementia often begins between the ages of 40 and 65 and may be misdiagnosed as a psychiatric problem.
Alzheimers disease remains the most common cause of dementia in younger as well as older adults. There is an inherited form of Alzheimers that typically arises at younger ages, but those cases account for fewer than 10 percent of young-onset disease. Most cases of Alzheimers occur sporadically, for unknown reasons, though genetic factors may increase risk.
You’ve Been Getting Easily Confused
Another typical sign of dementia, that may seem a bit bizarre, is forgetting what to do with everyday objects. According to Jessica Zwerling, MD, MS, director of the Memory Disorders Center at the Montefiore Health System, you might momentarily forget where to put your groceries, for example, or how to use your phone.
It can be a scary experience, and is definitely something you’ll want to point out to a doctor. And the same is true if you experience other forms of forgetfulness, such as suddenly needing to follow a recipe for dishes you make all the time. It’s this inability to remember simple, everyday things that can be cause for concern.
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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
Panel : Dementia Plus Syndromes And Associated Diseasessystemic Features
Myotonic dystrophy, cerebrotendinous xanthomatosis, mitochondrial disorders, familial Danish dementia
Niemann-Pick disease type C, Gaucher’s disease
Fabry’s disease, Lesch-Nyhan syndrome, mitochondrial disorders
Wilson’s disease, Gaucher’s disease, mitochondrial disorders
Frontotemporal lobar degeneration and motor neuron disease, Perry syndrome, mitochondrial disease , anti-NMDA receptor-mediated limbic encephalitis
Coeliac disease, Whipple’s disease, porphyria
Vitamin B12 deficiency, neuroacanthocytosis , Wilson’s disease, Gaucher’s disease
Behcet’s disease, systemic vasculitides and connective tissue disease, Fabry’s disease
Metabolic or infectious crises
Vanishing white matter disease, Alexander’s disease, ornithine transcarbamylase deficiency, alpha mannosidosis, porphyria
VGKC limbic encephalitis
The dementia plus syndromes describe patterns of cognitive impairment plus additional neurological or systemic features that aid investigation and diagnosis of the underlying disease process. This list cannot be comprehensive. Note that vascular disease, structural disorders, and neoplastic disease can be associated with a wide range of presentations. POLG=polymerase , gamma. VGKC=voltage-gated potassium channel.
Neuropsychological signatures of young-onset dementia
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Behavioural And Psychiatric Assessment
The behavioural examination begins during history-taking, with an assessment of the patient’s bearing, their interactions with others, and their spontaneous conversation. This assessment is particularly important in patients with behavioural variant FTLD, who might not have deficits on formal cognitive testing but who might make fatuous remarks, perseverate, or have environmental dependency . Patients with loss of emotional reactivity might appear inexplicably aloof or hostile. The patient’s approach to testing might also be informative . Conversely, patients with Alzheimer’s disease generally have a well preserved social appearance but might appear passive during the interview, turning often to their partner to answer questions . In addition to close observation of the patient, it is important to record a history of behavioural and psychiatric symptoms, emphasising the need for a corroborating history from an informant who knows the patient well. Some dementias might present with prominent delusions or other psychotic features conversely, the profound apathy of negative symptom schizophrenia might mimic a degenerative frontal lobe syndrome. Some patients who present with a static behavioural syndrome and normal imaging might have non-degenerative FTLD phenocopies. Features of REM sleep behaviour disorder should also be sought in the history as this favours a diagnosis of dementia with Lewy bodies.
You Can’t Remember That Restaurant’s Name
If you constantly forget what you had for breakfast, or can’t recall the name of that restaurant you just went to, consider it a red flag. “The most common sign is memory problems that interfere with your daily life,” Dr. Fillit says. “You may have trouble remembering familiar names or places on a regular basis.”
It may not seem like a big deal. But if you find yourself struggling to remember details like these, or if this has become a frustrating problem, point it out to a doctor so they can monitor the situation.
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Stage : Age Associated Memory Impairment
This stage features occasional lapses of memory most frequently seen in:
- Forgetting where one has placed an object
- Forgetting names that were once very familiar
Oftentimes, this mild decline in memory is merely normal age-related cognitive decline, but it can also be one of the earliest signs of degenerative dementia. At this stage, signs are still virtually undetectable through clinical testing. Concern for early onset of dementia should arise with respect to other symptoms.
Conditions With Symptoms Similar To Dementia
Remember that many conditions have symptoms similar to dementia, so it is important not to assume that someone has dementia just because some of the above symptoms are present. Strokes, depression, excessive long-term alcohol consumption, infections, hormonal disorders, nutritional deficiencies and brain tumours can all cause dementia-like symptoms. Many of these conditions can be treated.
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Dementia Can Happen At Any Age
Dementia can happen to anyone. It can come as an enormous shock but for some, it may also be a relief. You or your family may finally have an answer for whats changed.
There is no medical difference between dementia and younger onset dementia. However, younger onset dementia comes with unique social, emotional, and financial challenges. At the time of diagnosis, a person may be:
- In full-time employment
- Actively raising a young family
- Financially responsible for a family
- Physically strong and healthy.
As Australia’s leading dementia organisation, Dementia Australia is here to guide you through your younger onset dementia journey. Make the most of our online resources and stories about people like you.
Watch the following video: Dementia can happen at any age to learn about younger onset dementia and why its better to be diagnosed early. Or read the video transcript.
When To See A Doctor
Forgetfulness and memory problems dont automatically point to dementia. These are normal parts of aging and can also occur due to other factors, such as fatigue. Still, you shouldnt ignore the symptoms. If you or someone you know is experiencing a number of dementia symptoms that arent improving, talk with a doctor.
They can refer you to a neurologist who can examine you or your loved ones physical and mental health and determine whether the symptoms result from dementia or another cognitive problem. The doctor may order:
- a complete series of memory and mental tests
- a neurological exam
- brain imaging tests
If youre concerned about your forgetfulness and dont already have a neurologist, you can view doctors in your area through the Healthline FindCare tool.
Dementia is more common in people over the age of 65, but it can also affect younger people. Early onset of the disease can begin when people are in their 30s, 40s, or 50s. With treatment and early diagnosis, you can slow the progression of the disease and maintain mental function. The treatments may include medications, cognitive training, and therapy.
Possible causes of dementia include:
- Alzheimers disease, which is the leading cause of dementia
- brain damage due to injury or stroke
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What Are The Symptoms
The first symptoms of childhood Alzheimers are brain-related. Children will have trouble with memory and communication. They might have trouble learning new information and might lose motor or other skills theyd already gained.
Symptoms will depend on the child and on whether the child has NPC or MPS III. Common childhood Alzheimers symptoms include:
- slurred speech
- behavioral concerns
- digestive issues
Symptoms can appear at any time between a few months of age and early adulthood in both forms. In most cases, however, symptoms will start to show when a child is between 4 and 10 years old.
Since both NPC and MPS III are degenerative, symptoms will get worse with time.
What Are The Causes Of Young
The causes of young-onset dementia are similar to the diseases that usually cause dementia in older people. However, some causes, such as frontotemporal dementia , are more common in younger people. Dementia in younger people often has different symptoms, even when its caused by the same diseases as in older people.There is more information about some common causes of dementia, and how they can affect younger people, below.
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Stage : Moderately Severe Dementia
When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:
- Delusional behavior
Prevalence Of Young Onset Dementia In The Uk
It is estimated that there are 42,325 people in the UK who have been diagnosed with young onset dementia. . They represent around 5% of the 850,000 people with dementia.
The actual figure is likely to be much higher because of the difficulties of diagnosing the condition and might be closer to 6-9% of all people with dementia. Awareness amongst GPs is still relatively low and when people are still at work, symptoms are often attributed to stress or depression.
Prevalence rates for young onset dementia in black and minority ethnic groups are higher than for the population as a whole. People with a learning disability are also at greater risk of developing dementia at a younger age.
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Vascular Dementia And Vascular Cognitive Impairment
The term vascular dementia has been problematic for the same reasons as the term dementia, and the term vascular cognitive impairment is preferable. Impairment of episodic memory is less prominent in vascular dementia than in Alzheimer’s disease, particularly in patients with small vessel disease in whom impairment of executive function and cognitive slowing are more common. White matter changes indicative of small vessel disease and lacunar infarcts are commonly seen on MRI scans in elderly individuals and are particularly common in association with Alzheimer’s disease, often indicating mixed dementia. In younger patients there is usually, but not invariably, an association with vascular risk factors but intensive investigation might identify rarer causes, including mitochondrial disease or cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy . Amyloid angiopathy is important to recognise as some patients might have an inflammatory component that could be responsive to steroids lobar microhaemorrhages seen on T2*-weighted MRI might help detection. APP duplications are commonly associated with a prominent amyloid angiopathy with cerebral haemorrhages and seizures. Treatable causes such as cerebral vasculitis are also more commonly found in younger patients than in the elderly.
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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Early Symptoms Of Dementia
Dementia is a collection of symptoms that can occur due to a variety of possible diseases. Dementia symptoms include impairments in thought, communication, and memory.
If you or your loved one is experiencing memory problems, dont immediately conclude that its dementia. A person needs to have at least two types of impairment that significantly interfere with everyday life to receive a dementia diagnosis.
In addition to difficulty remembering, the person may also experience impairments in:
The Effects Of Being Diagnosed At A Young Age
The personal and social consequences of young onset dementia can be much different than those experienced by people diagnosed with dementia later in life.
People living with young onset dementia are often still working at the time of diagnosis, are physically fit, and may have dependent children or parents at home. They may have major financial commitments, like a mortgage or student loan, that they are looking to pay off.
The diagnosis of dementia, and the changes it will bring, can only increase the stress of handling these responsibilities. With dementia now in the mix, it’s natural for a younger person just diagnosed with dementia to think, “What’s next!?” and worry about how they can meet handling their responsibilities.
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