Statement | Category | Median (IQR) | % Participants scoring 4/5 or 5/5 in Round 3 |
---|---|---|---|
Very high consensus (n = 16) (median = 5, IQR = 0, ≥80% scoring 4/5 or 5/5) | |||
Young onset dementia is not a normal part of the ageing process | Characteristics | 5 (0) | 88% |
Young onset dementia refers to people whose symptoms emerge prior to 65 years of age | Characteristics | 5 (0) | 88% |
The symptoms and progression of young onset dementia will vary from person to person | Symptoms | 5 (0) | 100% |
Diagnosis of dementia should include a comprehensive specialist, multi-disciplinary assessment | Diagnosis | 5 (0) | 100% |
Reversible causes of impairment should be ruled out before diagnosing young onset dementia | Diagnosis | 5 (0) | 94% |
Neuropsychological testing can help to diagnose young onset dementia | Diagnosis | 5 (0) | 94% |
People with YOD need tailored, specialised, multidisciplinary services to support them after diagnosis | Treatment | 5 (0) | 100% |
People with young onset dementia benefit from support to remain actively engaged in their community | Treatment | 5 (0) | 100% |
Non-pharmacological interventions are often the most appropriate way of treating behavioural symptoms of young onset dementia | Treatment | 5 (0) | 94% |
Social engagement and physical activity are effective treatments for dementiaa | Treatment | 5 (0) | 94% |
There is no cure for most types of young onset dementia | Treatment | 5 (0) | 88% |
Young people with dementia require age appropriate care programs and accommodation options | Care | 5 (0) | 100% |
Care for people with young onset dementia should be person-centered | Care | 5 (0) | 100% |
Care partners (i.e. family and friends) of people with young onset dementia are at high risk for burden and stress | Care | 5 (0) | 100% |
A family approach to care is needed because many people with young onset dementia have young children in their care | Care | Â | 100% |
The financial impact of having young onset dementia is significant | Care | 5 (0) | 94% |
High consensus (n = 26) (median = 5, IQR ≤ 1, ≥80% scoring 4/5 or 5/5) | |||
The aetiological profile of young onset dementia is more varied than for late onset dementia | Characteristics | Â | 100% |
Young onset dementia is not a mental illness | Characteristics | 5 (1) | 94% |
Young people with dementia are more likely than older people to have a non-amnestic presentation (i.e. their first symptoms are less often memory-related) | Characteristics | 5 (1) | 94% |
Young onset dementia results from physical changes in the brain | Characteristics | 5 (1) | 88% |
Brain changes associated with young onset dementia usually develop several years before symptoms emerge | Characteristics | 5 (1) | 88% |
Most forms of young onset dementia shorten a person’s life | Characteristics | 5 (1) | 88% |
People with intellectual disability are at high risk for young onset dementia | Characteristics | 5 (1) | 82% |
Maintaining a healthy lifestyle reduces the risk of developing the most common forms of dementiaa | Causes and prevention | 5 (1) | 100% |
Most cases of young onset dementia are not directly inherited | Causes and prevention | 5 (1) | 94% |
In most cases, young onset dementia is caused by a mix of genetic and non-genetic factors | Causes and prevention | 5 (1) | 88% |
Directly inherited dementias are more common among younger people than older people | Causes and prevention | 5 (1) | 82% |
People with young onset dementia often experience difficulty carrying out familiar home, work or leisure tasks | Symptoms | 5 (1) | 94% |
Young onset dementia causes disability | Symptoms | 5 (1) | 88% |
People with young onset dementia may have difficulty speaking | Symptoms | 5 (1) | 88% |
The symptoms of young onset dementia can look like depression or another mental illness | Diagnosis | 5 (1) | 100% |
People with young onset dementia are commonly misdiagnosed | Diagnosis | 5 (1) | 94% |
Early diagnosis of dementia generally improves quality of life for people experiencing the condition | Diagnosis | 5 (1) | 88% |
There are no specific diagnostic markers for young onset dementiaa | Diagnosis | 5 (1) | 81% |
Non-pharmacological (i.e. non-drug) treatments can help people with young onset dementia maintain their independence | Treatment | 5 (1) | 88% |
People with young onset dementia and their families experience more burden and negative impact of their illness than older people with dementiaa | Care | 5 (1) | 100% |
Psychological adjustment to the diagnosis is often more difficult for young people with dementia | Care | 5 (1) | 94% |
Uncharacteristic behaviours in a person experiencing young onset dementia are generally a response to unmet needs | Care | 5 (1) | 94% |
Planning for end of life care is recommended following a diagnosis of dementia | Care | 5 (1) | 88% |
It is possible to communicate with a person who has advanced young onset dementia | Care | 5 (1) | 82% |
A person experiencing advanced young onset dementia will respond to changes in their physical environment | Care | 5 (1) | 82% |
Young people with dementia are more likely than older people to have a type of dementia in which neuropsychiatric (i.e. behavioural and psychological) symptoms are common | Care | 5 (1) | 82% |
Moderate consensus (n = 14) (median = 4–5, IQR ≤ 2, ≥60% scoring 4/5 or 5/5) | |||
Young onset dementia accounts for 5–10% of all dementias | Characteristics | 4 (1) | 76% |
Dementias that occur secondarily to another condition (e.g. Down syndrome, heavy alcohol use) are more common in younger people than in older people | Characteristics | 4 (1) | 76% |
Having high blood pressure increases a person’s risk of developing dementia | Causes and prevention | 4 (1) | 76% |
Difficulty making decisions can be a symptom of dementia | Symptoms | 4 (1) | 82% |
The sudden onset of cognitive problems is NOT characteristic of common forms of dementia | Symptoms | 5 (1) | 76% |
Sensory symptoms are common in young onset dementia | Symptoms | 5 (2) | 69% |
Movement is often affected in the later stages of young onset dementia | Symptoms | 4 (2) | 65% |
A person with young onset dementia may have difficulty learning new skillsa | Symptoms | 4 (2) | 63% |
Behavioural and psychological changes are key diagnostic factors for young onset dementia | Diagnosis | 4 (1) | 82% |
There are medications that can slow down the progression of some types of young onset dementiaa | Treatment | 4 (1) | 77% |
Neuropsychiatric (i.e. behavioural and psychological) symptoms are more common in young people with dementia than older peoplea | Care | 4 (1) | 93% |
It is not necessary or helpful to correct a person with young onset dementia when they are confused | Care | 5 (1) | 76% |
People with advanced young onset dementia often communicate through body language | Care | 4 (1) | 76% |
Daily care for a person with advanced young onset dementia is most effective when it focuses on providing comfort | Care | 4 (2) | 65% |
No consensus (low agreement) (n = 2) (median = 4–5 and (IQR ≤ 2 or ≥ 60% scoring 4/5 or 5/5)) | |||
Mixed types of dementia are less common in younger people than in older peoplea | Characteristics | 4 (2) | 56% |
Alzheimer’s disease is the most common form of young onset dementia | Characteristics | 4 (2) | 53% |