Dementia supports

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Research question: Are the recommendations in RES 203 regarding dementia therapy interventions still current?

What are the common and uncommon presentations of dementia?

What community and mainstream interventions are available to people diagnosed/living with dementia?

Date: 01/09/2022

Requestor: Naomi redacted: s22(1)(a)(ii)-irrelevant material

Endorsed by: n/a

Researcher: Aaron redacted: s22(1)(a)(ii)-irrelevant material

Cleared by:

Review date:

1. Contents

Dementia supports ……………………………………………………………………………………………………… 1

Contents ……………………………………………………………………………………………………….. 2
Summary ………………………………………………………………………………………………………. 2
Types and presentation of dementia ………………………………………………………………….. 2

3.1 Younger Onset Dementia ……………………………………………………………………………… 4

Management and treatment ……………………………………………………………………… 4

4.1 Clinical guidelines ………………………………………………………………………………………… 4

4.2 Allied health therapies for management of symptoms ……………………………………….. 5

Community and mainstream services ………………………………………………………………… 6

5.1 Dementia Australia ………………………………………………………………………………………. 6

5.2 Dementia Support Australia …………………………………………………………………………… 7

5.3 Dementia Alliance International ……………………………………………………………………… 7

5.4 Dementia Carers Australia / Dementia Reframes …………………………………………. 7

References ………………………………………………………………………………………………….. 7

2. Summary

Dementia can present differently in different people. There are multiple causes which are associated with different symptom presentations. Cognitive and behavioural / psychological symptoms are common. Some people may experience physical symptoms such as tremor or rigidity.

Evidence-based supports exist including programs offered by physiotherapists, occupational therapists, psychologists and other allied health. Speech therapists are often consulted for advice on eating and drinking.

There are a variety of publicly funded dementia-specific community services including services provided by Dementia Australia and Dementia Support Australia.

3. Types and presentation of dementia

Dementia presents differently in different people. The Diagnostic and Statistical Manual of Mental Disorders 5th edition uses the term Major Neurocognitive Disorder for dementia. The International Classification of Disease 11th edition retains the name dementia but classifies it as a type of Neurocognitive Disorder. Both classifications include the common subtypes of dementia associated with Alzheimer’s disease, frontotemporal lobe degeneration, Lewy body disease, Vascular disease, HIV, Huntington’s disease, Parkinson’s disease, substance use

and multiple concurrent causes (American Psychiatric Association, 2013; World Health Organisation, 2019).

These sub-types share common features including cognitive and behavioural/psychological symptoms. Cognitive symptoms of dementia can include problems with:

attention
processing speed
planning
decision making
memory
language
perceptual-motor abilities
social cognition (American Psychiatric Association, 2013; World Health Organisation, 2019).

Behavioural and psychological symptoms include:

psychosis
aggression
anxiety
apathy
agitation
depression
delusions
disinhibition
wandering
hallucinations
sleep disturbances (World Health Organisation, 2019; National Institute for Health and Care Excellence, 2018; Sansoni et al, 2016).

There is some variation among subtypes. People with Alzheimer’s disease generally present with initial memory problems and functional decline is gradual. In dementia caused by vascular disease, mood fluctuations may be more evident than memory loss in the initial stages. Personality and mood changes, disinhibition and language problems are common early symptoms of frontotemporal dementia. Dementia associated with Lewy body disease can present with visual hallucinations and physical symptoms such as tremor or rigidity (Guideline Adaptation Committee, 2016).

3.1 Younger Onset Dementia

In the NDIA, we are more likely to encounter younger onset dementia (YOD) due to the age-requirements for access to the NDIS. YOD is diagnosed when symptoms occur before the age of 65 (Dementia Australia, n.d). Also, people are more likely to experience dementia when they have been diagnosed with other conditions for which they may gain access to NDIS, such as severe/profound intellectual disability, Down Syndrome, autism, Parkinson’s disease and Huntington’s disease, (Lauterescu et al, 2017; Vivanti et al, 2021; Wissing et al, 2022). About 75% of people with Down Syndrome show signs of dementia before the age of 60 (Lauterescu et al, 2017).

YOD is much less common than later onset dementia. In 2021, estimates of all people experiencing dementia in Australia ranged from 386,200 to 472,000, while only about 23,308 people were living with YOD (Australian Institute of Health and Welfare, 2021). Dementia Australia estimates 28,800 people living with YOD in 2022 (Dementia Australia, 2022).

YOD can be caused by any of the common diseases associated with later onset dementia and can present in similar ways (Dementia Australia, n.d; Sansoni et al, 2016). There is evidence of some difference in symptom presentation. For example, memory problems may be less common in the initial stages compared to later onset dementia (Koedam et al, 2010) and YOD may progress faster (Veira et al, 2013).

Because symptoms occur before the age of 65, people with YOD may require different types of supports compared to people for whom symptoms present later in life. In 2021, AIHW estimates 64.7% of people with dementia were living in the community. This rises to 91% when only considering people with YOD. Younger people with dementia are more likely to be employed and still caring for children (Dementia Australia, n.d). This can change the dynamic of care, with caring responsibilities sometimes falling to younger children (Sansoni et al, 2016).

4. Management and treatment

4.1 Clinical guidelines

The Tactical Research Team’s 2021 research paper RES 203 Therapy Best Practice described best practice treatments for dementia based on the UK’s National Institute for Health and Care Excellence (NICE) 2018 clinical guidelines.

The Guideline Adaptation Committee of Australia’s National Health and Medical Research Council (NHMRC) adapted the 2006 version of the NICE guideline for use in Australia. The Clinical Practice Guidelines and Principles of Care for People with Dementia was published in 2016 and approved by NHMRC for 5 years (Guideline Adaptation Committee, 2016). Approval is no longer valid. However, the document does not appear to have been either reviewed or rescinded.

The following is a selection of recommendations relating to treatment and management. For more detail and additional recommendations refer to the NICE guideline Dementia:

assessment, management and support for people living with dementia and their carers or the NHMRC’s Clinical Practice Guidelines and Principles of Care for People with Dementia.

Overall health should be monitored and maintained, including:
- adequate nutrition and hydration (NHMRC 64-65; NICE 104, 131)
- exercise (NHMRC 68; NICE 104)
- dental care (NHMRC 65).
Offer a range of activities to promote wellbeing that are tailored to the person’s preferences (NHMRC 66; NICE 82).
Offer group cognitive stimulation therapy to people living with mild to moderate dementia (NICE 83).
Consider group reminiscence therapy for people living with mild to moderate dementia (NHMRC 84; NICE 84).
Consider cognitive rehabilitation or occupational therapy to support functional ability in people living with mild to moderate dementia (NICE 85).
Explore clinical or environmental causes for distress before starting treatment (NHMRC 77-78; NICE 91-92).
Consider psychological treatments for people with mild to moderate dementia experiencing mild to moderate depression or anxiety (NHMRC 79; NICE 101).
Consider sleep hygiene education, exposure to daylight, exercise and personalised activities as treatment for sleep problems (NICE 104).

4.2 Allied health therapies for management of symptoms

People with dementia may require referral to:

Psychologist or behaviour support practitioner (NHMRC 82-84, 92; NICE 11, 101)
Speech therapist (NHMRC 64; NICE 132)
Dietician (NHMRC 64)
Occupational therapist (NHMRC 67; NICE 85)
Physiotherapist or exercise physiologist (NHMRC 68)

Other professionals may also be required including dentists, audiologists, orthoptists, podiatrists and social workers (Guideline Adaptation Committee, 2016).

Woods et al found cognitive stimulation therapy could improve cognitive function in people with mild to moderate dementia. The support could be delivered by professionals (speech therapist, occupational therapist, nurse, support worker) or by family caregivers. Median session length

across the studies reviewed was 45 minutes, and the median frequency was 3 times a week, ranging from 1 to 5 times a week. The total possible exposure to the intervention varied dramatically, from 10 to 12 hours to 375 hours in the two-year study. Across the 15 studies, the median exposure time was 30 hours (Woods et al, 2012).

A 2021 meta-analysis showed a multimodal occupational therapy program with a cognition-oriented approach can improve cognitive dysfunction and basic activities of daily living. The effect was achieved with 1 to 3 one-hour sessions per week for at least 16 weeks (Ham et al, 2021). Integrating activities which are tailored to the individual with dementia and activities which involve the carer are likely to reduce behavioural symptoms and improve quality of life for people with mild to moderate dementia (Tan et al, 2022; Mohler et al, 2020). The effect can be obtained with 2 – 8 sessions at 1 - 2 hours delivered face-to-face or over the phone (Mohler et al, 2020).

Cognitive training delivered by a neuropsychologist or both psychologist and occupational therapist together is shown to improve global cognition and verbal semantic fluency when delivered at least once per week. Effect sizes were larger if delivered more than 3 times per week (Bahar-Fuchs, 2019).

One 2022 systematic review found no evidence that exercise programs had a positive effect on cognition or improvement in activities of daily living. However, the authors note that there may be evidence to support the effect of aerobic activity on neuropsychiatric symptoms (Steichele et al, 2022). In contrast, another 2022 review found that when aerobic exercise is included in a multicomponent exercise program of low to moderate intensity, it may improve global cognition for people with dementia. The effect was obtained with 1 to 7 sessions per week of 30 to 90 minutes each session (Venegas-Sanabria et al, 2022).

5. Community and mainstream services

As well as MyAgedCare and Carer’s Gateway, people living with dementia may be able to access Medicare subsidised allied health services through their Chronic Disease Management plan.

There are also several community services available for people living with dementia and their carers.

5.1 Dementia Australia

Dementia Australia provides information about dementia and living with dementia on their website as well as:

in person and online library services
support to access My Aged Care or NDIS
counselling
referrals to supports in the community

social support groups
National Dementia Hotline

5.2 Dementia Support Australia

Dementia Support Australia offers:

educational resources to assist people living with dementia and their carers to understand and manage behaviour changes
24-hour helpline
individual assessments and ongoing support
referral to medical and allied health services
Staying at Home program, which includes education and respite for carers and people living with dementia to encourage people to remain living in the community.

5.3 Dementia Alliance International

Dementia Alliance International facilitates online peer-to-peer support groups for people living with dementia.

5.4 Dementia Carers Australia / Dementia Reframes

Dementia Carers Australia / Dementia Reframed provides information resources as well as online workshops for people living with dementia and their carers.

6. References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596

Australian Institute of Health and Welfare. (2021). Prevalence of Dementia in Australia. https://www.aihw.gov.au/reports/dementia/dementia-in-aus/contents/population-health-impacts-of-dementia/prevalence-of-dementia

Bahar-Fuchs, A., Martyr, A., Goh, A. M. Y., Sabates, J., & Clare, L. (2020). Cognitive training for people with mild to moderate dementia: a Cochrane Review. BJPsych Advances, 26(2), 66–66. https://doi.org/10.1192/bja.2019.74

Dementia Australia. (n.d.). About younger onset dementia. Younger Onset Dementia Hub. from https://yod.dementia.org.au/about-younger-onset-dementia

Dementia Australia. (2022). Dementia Statistics. https://www.dementia.org.au/statistics

Guideline Adaptation Committee. (2016). Clinical Practice Guidelines and Principles of Care for People with Dementia. Sydney. National Health and Medical Research Council

Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People.

Ham, M.-J., Kim, S., Jo, Y.-J., Park, C., Nam, Y., Yoo, D.-H., & Moon, M. (2021). The effect of a multimodal occupational therapy program with cognition-oriented approach on cognitive function and activities of daily living in patients with Alzheimer’s disease: A systematic review and meta-analysis of randomized controlled trials. Biomedicines, 9(12), 1951. https://doi.org/10.3390/biomedicines9121951

Koedam, E. L. G. E., Lauffer, V., van der Vlies, A. E., van der Flier, W. M., Scheltens, P., & Pijnenburg, Y. A. L. (2010). Early-versus late-onset Alzheimer’s disease: more than age alone. Journal of Alzheimer’s Disease: JAD, 19(4), 1401–1408. https://doi.org/10.3233/JAD-2010-1337

Lautarescu, B. A., Holland, A. J., & Zaman, S. H. (2017). The early presentation of dementia in people with Down syndrome: A systematic review of longitudinal studies. Neuropsychology Review, 27(1), 31–45. https://doi.org/10.1007/s11065-017-9341-9

Möhler, R., Renom, A., Renom, H., & Meyer, G. (2020). Personally tailored activities for improving psychosocial outcomes for people with dementia in community settings. Cochrane Database of Systematic Reviews, 8(8), CD010515. https://doi.org/10.1002/14651858.CD010515.pub2

National Institute for Health and Care Excellence. (2018). Dementia: assessment, management and support for people living with dementia and their carers (NICE guideline NG97). https://www.nice.org.uk/guidance/ng97/evidence/full-guideline-pdf-4852695709

Tan, D. G. H., Boo, B. M. B., Chong, C. S., Tan, M. M. L.-L., & Wong, B.-S. (2022). Effectiveness of home-based, non-exercise interventions for dementia: A systematic review. Frontiers in Aging Neuroscience, 14, 846271. https://doi.org/10.3389/fnagi.2022.846271

Venegas-Sanabria, L. C., Cavero-Redondo, I., Martínez-Vizcaino, V., Cano-Gutierrez, C. A., & Álvarez-Bueno, C. (2022). Effect of multicomponent exercise in cognitive impairment: a systematic review and meta-analysis. BMC Geriatrics, 22(1), 617. https://doi.org/10.1186/s12877-022-03302-1

Vieira, R. T., Caixeta, L., Machado, S., Silva, A. C., Nardi, A. E., Arias-Carrión, O., & Carta, M. G. (2013). Epidemiology of early-onset dementia: a review of the literature. Clinical Practice and Epidemiology in Mental Health: CP & EMH, 9(1), 88–95. https://doi.org/10.2174/1745017901309010088

Vivanti, G., Tao, S., Lyall, K., Robins, D. L., & Shea, L. L. (2021). The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder. Autism Research: Official Journal of the International Society for Autism Research, 14(10), 2189–2199. https://doi.org/10.1002/aur.2590

Wissing, M. B. G., Ulgiati, A. M., Hobbelen, J. S. M., De Deyn, P. P., Waninge, A., & Dekker, A. D. (2022). The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms. Journal of Applied Research in Intellectual Disabilities: JARID, 35(1), 24–45. https://doi.org/10.1111/jar.12920

Woods, B., Aguirre, E., Spector, A. E., & Orrell, M. (2012). Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews, 2, CD005562. https://doi.org/10.1002/14651858.CD005562.pub2

World Health Organization. (2019). ICD-11: International classification of diseases (11th revision). https://icd.who.int/