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HOW TO TREAT 39 dementia ; they may precipitate entry into residential care and presentations to ED . 50 , 54 , 55 These changes occur in almost all individuals with dementia and are categorised into affective ( depression , apathy , anxiety , elation , irritability ); psychotic ( delusions , hallucinations , paranoia ); hyperactivity ( pacing , restlessness , disinhibition ); aggression / agitation ( verbal , physical ); and other ( wandering , intrusiveness , shadowing , reverse sleep-wake cycle , inappropriate behaviours such as urination ). The pathophysiology behind these behaviour changes is complex and may be due to the atrophy of associated brain areas , leading to decreased emotional regulation , self-awareness and perception . 56
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HOW TO TREAT 39 dementia ; they may precipitate entry into residential care and presentations to ED . 50 , 54 , 55 These changes occur in almost all individuals with dementia and are categorised into affective ( depression , apathy , anxiety , elation , irritability ); psychotic ( delusions , hallucinations , paranoia ); hyperactivity ( pacing , restlessness , disinhibition ); aggression / agitation ( verbal , physical ); and other ( wandering , intrusiveness , shadowing , reverse sleep-wake cycle , inappropriate behaviours such as urination ). The pathophysiology behind these behaviour changes is complex and may be due to the atrophy of associated brain areas , leading to decreased emotional regulation , self-awareness and perception . 56
Few studies have investigated the differences in behaviour changes and impact on caregivers in young-onset and older-onset dementia . There may be more behaviour changes ( depression , anxiety and agitation ) in those with young-onset dementia overall ; however , in those with dementia living in residential care , there may be higher levels of agitation in older people and higher levels of apathy in younger people . 57 , 58 Some studies have shown no differences in the frequency or type of behaviour changes regardless of age of dementia onset . 59 Despite these findings , we would recommend referral to relevant behaviour support programs for holistic assessment and management of these behaviour changes . These include the local adult and aged persons mental health services and Dementia Services Australia ( see table 5 ). People with young-onset dementia may come under ‘ aged ’ or ‘ adult ’ services , which can be problematic .
In some patients , behaviour changes are manifestations of an unmet need that they cannot communicate ( for example , temperature regulation , boredom ). 56 Behaviours can also reflect the patient ’ s lowered stress response threshold , and / or represent a response to a trigger that cannot be communicated in another way . Non-pharmacological management of these behaviour changes is first-line because of the potential side effects of psychotropic medications . 60 This involves practical person-centred strategies to meet the individual ’ s needs ( see table 6 ). The evidence for various non-pharmacological strategies ranges from low to high ; and knowing what the behaviour is , when and why it occurs , and what might improve or worsen it , can help improve outcomes . 61-63
Accurate monitoring of behaviours can shape strategies . 64 Strategies for the individual may include music therapy for aggression , and aromatherapy for agitation and irritability ; carers may benefit from psychoeducation and training about dementia ; and problem-solving can be helpful in reframing what these behaviours may represent (‘ being difficult ’ may be an unmet need as thirst , hunger and loneliness ). 61
Pain is a common cause of behaviour changes , and regular use of paracetamol may be a useful addition . 65 Regular physical activity and other activity programs can help alleviate boredom .
A combination of non-pharmacological and pharmacological treatments is sometimes required ; remember to ‘ start low and go slow ’. Younger people with dementia are
Table 3 . Management of young-onset dementia Management Who How Other
Cognition |
Individual |
Medications Donepezil tablet 10mg daily Rivastigmine capsule 3-6mg daily Rivastigmine patch 4.3mg , 9.5mg , 13.3mg / 24 hours Galantamine tablet 4mg , 8mg , 12mg ; ER 8mg , 16mg , 24mg Memantine tablets 10-20mg bd |
often more robust , in better health and on fewer medications than older people ; this can simplify the initiation of psychotropics for behaviour changes associated with dementia . In general , treating the potential cause of behaviour change may have better
Psychoeducation about progression , strengths , weaknesses , structure / routine , prompts , other aids
Family Psychoeducation about progression , strengths , weaknesses , structure / routine , prompts , other aids
Mood |
Individual |
Medications SSRI , eg , citalopram 10-20mg daily ; escitalopram 5-10mg daily ; sertraline 50-250mg mane SNRIs , eg , venlafaxine XR 75-300mg mane Mirtazapine 30-45mg nocte |
Function and abilities
Finances and employment
Family
Psychotherapy ( supportive ), for life changes , grief / loss , ways to stay positive
Important to inquire how family members and carers are managing May require medications as above Psychotherapy : role changes and transitions , grief / loss
Individual Daily functioning and activities of daily living ( ADLs ) Safety and activities in the home Personal ADLs Driving assessment
Individual
Family
Review of employment status , may need to transition to part-time or alternative roles according to cognition , function and safety May need to access superannuation , Centrelink / unemployment benefits
As above Carer allowance
Legal |
Individual and family |
Power of attorney , financial administrator , medical treatment |
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decision-maker |
Community supports
Individual and family Can access NDIS for supports and services if younger than 65
Accommodation Individual NDIS accommodation and services such as SIL and SDA
efficacy ; for example , if agitation is thought to be related to delusions , an antipsychotic is recommended ( see table 3 ).
Some behaviours , such as wandering , vocalisations , shadowing , intrusiveness , repetitive activities and inappropriate behaviours ( such as urination / defecation , undressing and sexualised behaviour ) are less responsive to psychotropic medications . Some antipsychotics have a ‘ black box ’ warning about the risk of sudden death from a cardiac arrhythmia ;
Side effects : nausea , gastrointestinal symptoms , vivid dreams
Need PBS prescription
May have some benefit for depression and anxiety Side effects : nausea , loose bowels , sedation
Support groups can be helpful
Support groups can be helpful
Occupational or diversional therapist Speech therapy Exercise physiologist Music therapist Dietitian
Social worker
Depending on capacity and ability to make decisions
Palliative care |
Individual and family |
Can initiate discussion with services such as Dementia Australia |
Social worker |
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GP and other clinicians involved |
Behaviour changes
Individual
Antipsychotics Risperidone 0.5-1mg up to tds Olanzapine 2.5-5mg bd up tds Quetiapine 12.5-50mg up to tds
Antidepressants ( see above )
Benzodiazepines Oxazepam 7.5-15mg up to tds
Other : valproate , carbamazepine
Table 4 . Treatment for potentially reversible young-onset dementias Condition
Multiple sclerosis , autoimmune encephalitis and neurosarcoidosis
HIV dementia Neurosyphilis
Whipple ’ s disease ( a very rare systemic condition caused by Tropheryma whipplei )
Alcohol or other drugs or abuse
Heavy metal poisoning
Metabolic encephalopathy Obstructive sleep apnoea
Normal pressure hydrocephalus
Treatment
Acute : steroids Long-term : immune-modulation agents
Usual retroviral treatments will reduce dementia risk Penicillin , ceftriaxone or doxycycline
Initial : ceftriaxone or penicillin Maintenance : trimethoprim-sulfamethoxazole
Cessation and abstinence Alcohol : IV thiamine ( before glucose )
Chelation
Treat underlying cause
Behaviour modification – weight loss Continuous positive airway pressure Oral devices Uvular and palatal surgery
Surgical shunt but cognitive deficits do not usually reverse
Limitations to PBS eligibility Investigations recommended before starting include ECG for QTc interval Indicated for agitation , irritability and aggression Side effects : sedation , Parkinsonism
Indicated for depression , irritability and anxiety Short-term perform an ECG before initiating this medication . 66
Note that there are limitations and specific instructions regarding the prescription of antipsychotics in residential care . Risperidone is currently the only PBS-approved anti psychotic for use in the behaviour changes related to dementia . 67
PROGNOSIS
ACCESS to assessments and investigations are crucial for the accurate diagnosis of young-onset dementia , and these will determine progression and prognosis .
Recent work regarding the mortality in young-onset dementia using a cohort of 386 inpatients demonstrated that the median survival from age of onset for AD , FTD and vascular dementia was 11.3 years , 10.6 years and 12.3 years , respectively , with a mean age of death of 62.4 years ( Loi et al , unpublished ).
A genetic form of young-onset dementia may have specific implications for age of onset and death . For example , the MAPT-type FTD is reported to have the youngest age of symptom onset compared with the other genetic-type FTDs ; this is specifically as a result of the actual