Table 2 Results of Round 1 - expert statements regarding essential facts to understanding young onset dementia

1

Young onset dementia refers to people whose symptoms emerge prior to 65 years of age

2

Young onset dementia is not a mental illness

3

Young onset dementia accounts for 5–10% of all dementias

4

Dementias that occur secondarily to another condition (e.g. Down syndrome, heavy alcohol use) are more common in younger people than in older people

5

Young onset dementia results from physical changes in the brain

6

Mixed types of dementia are less common in younger people than in older people

7

Brain changes associated with young onset dementia usually develop several years before symptoms emerge

8

The aetiological profile of young onset dementia is more varied than for late onset dementia

9

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)

10

People with intellectual disability are at high risk for young onset dementia

11

Young onset dementia is not a normal part of the ageing process^a

12

Most forms of young onset dementia shorten a person’s life

13

Alzheimer’s disease is the most common form of young onset dementia

14

Directly inherited dementias are more common among younger people than older people

15

Most cases of young onset dementia are not directly inherited

16

In most cases, young onset dementia is caused by a mix of genetic and non-genetic factors

17

Having high blood pressure increases a person’s risk of developing dementia

18

Maintaining a healthy lifestyle reduces the risk of developing the most common forms of dementia

19

The symptoms and progression of young onset dementia will vary from person to person

20

The sudden onset of cognitive problems is NOT characteristic of common forms of dementia

21

People with young onset dementia often experience difficulty carrying out familiar home, work or leisure tasks

22

Sensory symptoms are common in young onset dementia

23

Young onset dementia causes disability

24

Movement is often affected in the later stages of young onset dementia^a

25

People with young onset dementia may have difficulty speaking^a

26

A person with young onset dementia may have difficulty learning new skills^a

27

Difficulty making decisions can be a symptom of dementia

28

Reversible causes of impairment should be ruled out before diagnosing young onset dementia

29

People with young onset dementia are commonly misdiagnosed

30

There are no specific diagnostic markers for young onset dementia

31

Behavioural and psychological changes are key diagnostic factors for young onset dementia

32

Early diagnosis of dementia generally improves quality of life for people experiencing the condition

33

Diagnosis of dementia should include a comprehensive specialist, multi-disciplinary assessment

34

Neuropsychological testing can help to diagnose young onset dementia

35

The symptoms of young onset dementia can look like depression or another mental illness

36

There is no cure for most types of young onset dementia

37

People with young onset dementia benefit from support to remain actively engaged in their community

38

There are medications that can slow down the progression of some types of young onset dementia

39

Non-pharmacological (i.e. non-drug) treatments can help people with young onset dementia maintain their independence

40

People with YOD need tailored, specialised, multidisciplinary services to support them after diagnosis

41

Social engagement and physical activity are effective treatments for dementia

42

Non-pharmacological interventions are often the most appropriate way of treating behavioural symptoms of young onset dementia

43

The financial impact of having young onset dementia is significant

44

Care for people with young onset dementia should be person-centered

45

Young people with dementia require age appropriate care programs and accommodation options

46

A family approach to care is needed because many people with young onset dementia have young children in their care

47

Planning for end of life care is recommended following a diagnosis of dementia^a

48

People with young onset dementia and their families experience more burden and negative impact of their illness than older people with dementia

49

Psychological adjustment to the diagnosis is often more difficult for young people with dementia

50

Neuropsychiatric (i.e. behavioural and psychological) symptoms are more common in young people with dementia than older people

51

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

52

Uncharacteristic behaviours in a person experiencing young onset dementia are generally a response to unmet needs

53

Care partners (i.e. family and friends) of people with young onset dementia are at high risk for burden and stress

54

It is possible to communicate with a person who has advanced young onset dementia^a

55

It is not necessary or helpful to correct a person with young onset dementia when they are confused^a

56

People with advanced young onset dementia often communicate through body language^a

57

Daily care for a person with advanced young onset dementia is most effective when it focuses on providing comfort^a

58

A person experiencing advanced young onset dementia will respond to changes in their physical environment^a