Remembering the person behind the dementia

Managing changed behaviours in dementia is challenging, and addressing the needs of the person at the centre is key.

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Almost one in 10 Australians aged 65 years and over are living with dementia.^1,2

Over the next two decades this number is predicted to increase rapidly.²

People living with dementia are some of the most vulnerable members in our community. In addition to progressive cognitive decline, many will experience non-cognitive symptoms or changed behaviours over the course of their illness which can be very distressing for them, their families and carers.³ The spectrum of changed behaviours is broad and can include agitation, aggression, psychosis, depression, anxiety, insomnia, wandering, screaming, disinhibition, hoarding and general restlessness.⁴

Non-pharmacological management strategies are first line across guidelines, but there remains an over-reliance on medicines as highlighted by the 2019-21 Royal Commission into Aged Care Quality and Safety.⁵ This article summarises some of the resources and services available for health professionals to support a person-centred approach in the assessment and management of changed behaviours.

Assessing changed behaviours

A person with dementia may experience changed behaviours for many reasons beyond those related to the progression of the illness itself – for example, a change in their environment or an unmet need.⁶ A comprehensive assessment that considers not just the behaviours but also the individual, their likes and dislikes, and their psychosocial and cultural background, is key to providing support and management that is truly tailored to the needs of the person living with dementia.

While a careful history often provides the most valuable information to guide assessment, it may be helpful to quantify changed behaviours with a validated scoring tool. Two broad measures recommended in the Dementia Outcomes Measurement Suite are the Neuropsychiatric Inventory (NPI) and the Behavioural Pathology in Alzheimer’s Disease (BEHAVE-AD) rating scale.^7,8 Both rely on caregiver feedback however an inherent problem is that they don’t consider the patient’s point of view.

The NPS MedicineWise Behaviour Diary, designed specifically with patients in mind, is intended to be used by the person living with dementia (where possible)  along with the help of their carer, to track changed behaviours over time. It provides space to document personal likes, dislikes and hobbies, and can also be used at the point of care to help identify triggers and tailor management.

For health professionals and those providing care to people with dementia interested in learning more about assessing changed behaviours, Dementia Training Australia’s (DTA) online course Understanding Responsive Behaviours covers a variety of assessment frameworks useful in clinical practice including the ABC (Antecedent, Behaviour and Consequence) approach, P.I.E.C.E.S. framework, Progressively Lowered Stress Threshold (PLST) model and the Need Driven Behaviour (NDB) model.

Person-centred management strategies

Person-centred care focuses on tailoring management to the needs and preferences of the person living with dementia in a way that promotes functioning and well-being.⁹ Examples of non-pharmacological strategies that can support person-centred care for changed behaviours include a regular routine, environmental modification, music therapy, psychological therapy, and carer and staff training.⁹

The evidence for non-pharmacological strategies is variable but studies do suggest they can be effective for specific behaviours, such as psychological therapy for anxiety and depression,¹⁰ and music therapy for aggression and agitation.¹¹ There is also some evidence to suggest that strategies in combination, such as massage and touch therapy or music and touch therapy, can be more effective than medicines for reducing aggression and agitation in people living with dementia.¹² Non-pharmacological strategies are also much safer than medicines with little to no risk of side effects. Unfortunately, they are frequently underutilised by healthcare staff due to perceived barriers including lack of time, resources and knowledge about changed behaviours.¹³

Support for health professionals, patients and carers is available through the Dementia Behaviour Management Advisory Service (BDMAS) which provides a 24-hour hotline (1800 699 799). Staff and carers across acute, primary and residential aged care settings can contact the service for advice, strategies and written recommendations tailored specifically to the individual. Eligibility criteria apply.

Antipsychotics and their limits

Antipsychotics have a limited role in the management of changed behaviours and evidence for their effectiveness is mixed at best. Existing data suggest that only up to 20% of patients with dementia may experience benefit from treatment with an antipsychotic, and certain behaviours such as wandering are unlikely to respond at all.^14,15

Potential harms associated with antipsychotics include an increased risk of mortality, cardiovascular events, urinary tract infections, sedation and falls.^8,15 Most guidelines recommend antipsychotics be used with caution and only after first-line non-pharmacological strategies have failed, or in situations where the changed behaviours are severely distressing or place the person at risk to themselves or others.^9,16

In Australia, risperidone is the only Therapeutic Goods Administration approved and Pharmaceutical Benefits Scheme listed medicine for the management of changed behaviours in Alzheimer disease where both aggression and psychosis are present.¹⁷ If used, it is crucial informed consent from the patient and/or carer is obtained, and the patient is carefully reviewed over a period of 12 weeks with a plan to deprescribe when the medication is no longer necessary or is ineffective. A deprescribing tool, such as those provided by NPS MedicineWise or the NSW Therapeutic Advisory Group (TAG), can be helpful for the review and tapering of antipsychotics.

A program to support health professionals and patients

The NPS MedicineWise program Dementia and changed behaviours: a person-centred approach aims to support health professionals and their patients across primary and residential aged care settings in the use of non-pharmacological strategies and quality use of medicines.

The program was developed in consultation with key stakeholders including the Aged Care Division of the Australian Department of Health and the Aged Care Quality and Safety Commission.

Key features of the program include educational visits to general practices and residential aged care facilities, online webinars for health professionals, as well as a suite of online resources for both health professionals and consumers such as the article A portrait of dementia and changed behaviours which takes a closer look at some of the challenges.

For more information on the program, please visit the NPS MedicineWise website.

Dr Anna Samecki is a general practitioner and medical advisor at NPS MedicineWise.

References

1. Australian Institute of Health and Welfare. Dementia in Australia. Canberra: Australian Government, 2012.
2. The Institute for Governance and Policy Analysis. Economic cost of dementia in Australia 2016-2056. Canberra: University of Canberra, 2017.
3. Brodaty H, Draper B, Saab D, et al. Psychosis, depression and behavioural disturbances in Sydney nursing home residents: prevalence and predictors. Int J Geriatr Psychiatry, 2001;16:504-12.
4. Guideline Adaptation Committee. Clinical practice guidelines and principles of care for people with dementia. Sydney: NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People, 2016.
5. Royal Commission into Aged Care Quality and Safety. Interim report: neglect. Canberra: Australian Government, 2019.
6. Dementia Australia. Changed behaviours and dementia. Sydney: Dementia Australia, 2015.
7. Sansoni J, Marosszeky N, Jeon Y-H et al. Dementia Outcomes Measurement Suite (DOMS) Report. Wollongong: Centre for Health Service Development, University of Wollongong, 2007.
8. The Royal Australian & New Zealand College of Psychiatrists. Assessment and Management of People with Behavioural and Psychological Symptoms of Dementia (BPSD): A Handbook for NSW Health Clinicians. North Sydney: NSW Ministry of Health, 2013.
9. National Institute for Health and Care Excellence (UK). Assessment, management and support for people living with dementia and their carers. NICE Guideline, No. 97. London, 2018.
10. Orgeta, V, Qazi, A, Spector, A, Orell, M. Psychological treatments for depression and anxiety in dementia and mild cognitive impairment: systematic review and meta-analysis. Br J Psychiatry, 2015; 207(4):293-8.
11. Abraha, I, Rimland, JM, Trotta, FM, et al. Systematic review of systematic reviews of non-pharmacological interventions to treat behavioural disturbances in older patients with dementia. The SENATOR-OnTop series. BMJ Open, 2017; 7(7):e012759corr1.
12. Watt, JA, Goodarzi, Z, Veroniki, AA, et al. Comparative efficacy of interventions for aggressive and agitated behaviors in dementia: A systematic review and network meta-analysis. Ann Intern Med, 2019;171:633-42.
13. Belcher, J, Warwar, S, Mak, J. Formative Research: Psychotropic medicines in older people (community and aged care). Sydney: NPS MedicineWise, 2020.
14. Schneider, L, Dagerman, K, Insel, P. Efficacy and adverse effects of atypical antipsychotics for dementia: Meta-analysis of randomized, placebo controlled trials. Am J Geriatr Psychiatry, 2006;14(3):191-210.
15. Peisah C, Skladzien E. The use of restraints and psychotropic medications in people with dementia. Sydney: Alzheimer’s Australia, 2014.
16. Royal Australian College of General Practitioners. RACGP aged care clinical guide (Silver Book).
17. NPS MedicineWise. Risperidone: Revised PBS restrictions for behavioural and psychological symptoms of dementia. March 2020.