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Table 3 Delphi consensus statements

From: What do health professionals need to know about young onset dementia? An international Delphi consensus study

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

 

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

 

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%

  1. aAt least one participant responded that this statement was not applicable to YOD