Background
Methods
Design
Participants
Round one (June 2020): gathering information
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What key facts are essential to understanding young onset dementia? Participants were provided with five concept areas to consider: (a) causes and characteristics, (b) symptoms and progression, (c) assessment and diagnosis, (d) prevention and treatment, and (e) care.
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What key facts about young onset dementia are different to late onset dementia and the same as late onset dementia?
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What key facts about young onset dementia are frequently misunderstood by health professionals?
Round two (August 2020): rating knowledge statements
Round three (November 2020): obtaining consensus
Measurement and analysis
Results
Round 1 (n = 28) | Round 2 (n = 19) | Round 3 (n = 17) | |
---|---|---|---|
Country | |||
Australia | 15 (54%) | 11 (58%) | 10 (59%) |
Canada | 7 (25%) | 4 (21%) | 3 (18%) |
Netherlands | 2 (7%) | 1 (5%) | 1 (6%) |
Norway | 1 (4%) | 1 (5%) | 1 (6%) |
United Kingdom | 3 (11%) | 2 (11%) | 1 (6%) |
Unknown | – | – | 1 (6%) |
Occupation | |||
Academic | 2 (7%) | 1 (5%) | 1 (6%) |
Advocate | 1 (4%) | 1 (5%) | 1 (6%) |
Other | 9 (32%) | 6 (32%) | 4 (24%) |
Unknown | – | – | 1 (6%) |
Clinician (current, retired or academic/clinician) | 16 (57%) | 11 (58%) | 10 (59%) |
Neurologist | 1 (6%) | 1 (9%) | 1 (10%) |
Psychiatrist | 1 (6%) | 1 (9%) | 1 (10%) |
Consultant Neuropsychiatrist | 1 (6%) | – | – |
Physician | 1 (6%) | 1 (9%) | 1 (10%) |
Elderly Care Physician | 1 (6%) | – | |
Psychologist | 4 (25%) | 4 (36%) | 3 (30%) |
Clinical Neuropsychologist | 2 (13%) | 1 (9%) | 1 (10%) |
Clinical Geropsychologist | 1 (6%) | – | – |
Social Worker | 1 (6%) | – | – |
Nurse practitioner | 1 (6%) | 1 (9%) | 1 (10%) |
Not specified | 2 (13%) | 2 (18%) | 2 (20%) |
Area of expertisea | |||
Research | 14 (50%) | 11 (58%) | 10 (59%) |
Clinical care | 15 (54%) | 11 (58%) | 10 (59%) |
Neuropsychology | 5 (18%) | 3 (16%) | 3 (18%) |
NDIS | 2 (7%) | 2 (11%) | 2 (12%) |
Service delivery | 11 (39%) | 9 (47%) | 8 (47%) |
Education and teaching | 13 (46%) | 8 (42%) | 6 (35%) |
Advocacy | 15 (54%) | 11 (58%) | 8 (47%) |
Lived experience | 3 (11%) | 2 (11%) | 2 (12%) |
Other | 2 (7%) | 2 (11%) | 2 (12%) |
Unknown | – | – | 1 (6%) |
Round 1: gathering information
# | Statements |
---|---|
Characteristics | |
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 processa |
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 |
Causes and prevention | |
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 |
Symptoms | |
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 dementiaa |
25 | People with young onset dementia may have difficulty speakinga |
26 | A person with young onset dementia may have difficulty learning new skillsa |
27 | Difficulty making decisions can be a symptom of dementia |
Diagnosis | |
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 |
Treatment | |
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 |
Care | |
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 dementiaa |
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 dementiaa |
55 | It is not necessary or helpful to correct a person with young onset dementia when they are confuseda |
56 | People with advanced young onset dementia often communicate through body languagea |
57 | Daily care for a person with advanced young onset dementia is most effective when it focuses on providing comforta |
58 | A person experiencing advanced young onset dementia will respond to changes in their physical environmenta |
Round 2: rating knowledge statements
Round 3: obtaining consensus
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% |