Table 2 Expert statements considered important for a contemporary understanding dementia (N = 66)

A:

Basic characteristics of dementia (14% of total items)

1

Dementia refers to a group of diseases that affect the brain.

2

People with dementia have a disease that affects the structure and function of their brain.

3

Dementia is not a psychological condition.

4

Dementia always becomes worse over time.

5

Dementia is a terminal condition that will result in death.

6

Dementia most commonly affects older adults.

7

Dementia can occur in younger adults.

8

Dementia is not a part of normal ageing.

9

Prevalence of dementia is increasing within many societies.

B:

Symptoms and progression (30% of total items)

10

Dementia affects people across five domains: cognitive, functional, psychiatric, behavioural, and physical.

11

Difficulty swallowing is a symptom of dementia.

12

Difficulty with movement is a symptom of dementia.

13

Difficulty speaking is a symptom of dementia.

14

Memory loss is a symptom of dementia.

15

Behavioural changes are symptoms of dementia.

16

Personality changes are symptoms of dementia.

17

Wandering is a symptom of dementia.

18

Confusion is a symptom of dementia.

19

Difficulty making decisions is a symptom of dementia.

20

Difficulty with problem solving is a symptom of dementia.

21

Difficulty with learning is a symptom of dementia.

22

Cognitive and functional losses can fluctuate in a person with dementia.

23

Symptoms of dementia differ by type of underlying disease.

24

People with dementia often have other chronic medical conditions.

25

It may take years for dementia to develop to the point that it affects cognition and functioning.

26

Dementia has discernable stages.

27

The course of dementia is unpredictable.

28

It is possible to communicate with a person who has advanced dementia.

29

A person with advanced dementia may be able to communicate non-verbally.

C:

Diagnosis and assessment (17% of total items)

30

Alzheimer’s disease is the most common form of dementia.

31

Dementia with Lewy Bodies is a common form of dementia.

32

Vascular dementia is a common form of dementia.

33

Fronto-temporal dementia is a common form of dementia.

34

Definitive diagnosis of dementia in a living patient is difficult.

35

Early diagnosis of dementia improves treatment outcomes.

36

A high proportion of people who have dementia do not have a diagnosis.

37

Assessment of a person with dementia is important to determine whether they are suffering from treatable and co-existing medical and psychiatric conditions.

38

Depression in a person with dementia should be identified and treated.

39

Delirium should be ruled out in a person with suspected dementia.

40

Pain in a person with dementia should be identified and treated.

D:

Treatment and prevention (15% of total items)

41

There is currently no cure for dementia.

42

Symptoms of dementia can be improved with medication.

43

Psychosocial interventions can improve quality of life for people with dementia.

44

Non-pharmacological interventions are often more appropriate for treating dementia-related behavioural problems.

45

Psychotropic medications may cause undue harm to a person with dementia.

46

Cognitive stimulation for the person with dementia can improve symptoms.

47

Exercise for the person with dementia can improve symptoms.

48

Some of the risk factors for dementia are modifiable.

49

A healthful lifestyle can reduce the risk of developing dementia.

50

In most cases, having parents with dementia does not greatly increase the risk of developing the condition.

E:

Care for people with dementia (24% of total items)

51

It is possible for a person with dementia to live independently during the initial stages of the condition.

52

Most people who have dementia live in their own homes in the community.

53

People with dementia are not always a risk to themselves and others.

54

People with dementia will eventually require a high level of care and assistance with activities of daily living.

55

It is important to plan the future care of a person once a diagnosis of dementia has been made.

56

Education following diagnosis is important to help a person with dementia and their carer to manage the condition.

57

The wishes of a person with dementia should be taken into account when planning for their treatment and care.

58

A palliative approach to care is appropriate for a person with dementia.

59

A person-centred approach to care is appropriate for a person with dementia.

60

Aggressive and invasive treatments are often not appropriate for people with dementia.

61

Relationships remain important for a person with dementia.

62

People with dementia should continue to be involved in meaningful physical, social, and mental activities.

63

Caring for a person with dementia can be stressful.

64

Caregivers of people with dementia require support.

65

A person with dementia may retain more understanding than they can express.

66

A person’s past can be important for understanding behavioural problems.