Assessing and managing dementia in the Hunter

Author: Dr John Ward, Geriatrician

The current prevalence of dementia in the LGAs of Newcastle, Lake Macquarie and Port Stephens is about 6000, with an incidence of around 500 new cases per year. Currently, one in ten Australians over the age of 65 are living with dementia and one in eight Aboriginal and Torres Strait Islanders over the age of 45. The National Centre for Social and Economic Modelling (NATSEM) have predicted an almost doubling of the incidence of dementia in the next twenty years.

Of all the chronic diseases of older age, dementia causes sufferers and families the most stress. People experiencing cognitive impairment suffer a loss of self-esteem that is not experienced with diseases involving other organ systems. This undermining of personhood can be easily aggravated by poorly designed assessment and management services. If families are left without supportive case management, the stress upon carers can be overwhelming, particularly in 50% of cases where behavioural and personality changes are associated with dementia.

Primary care practitioners find the complexity of dementia challenging. The time required to deal with cognitively impaired patients, particularly with complex behaviours, hearing impairment or speech problems, is difficult to find in general practice. 

ACAT assessments in the Hunter are carried out in a timely manner but follow up support for people with dementia falls to the small number of Community Dementia Nurses. Navigating the MyAgedCare system is challenging for cognitively aware older people but often impossible for people with cognitive impairment, some of whom are in denial about their needs.

Once delegated for a Community Support Package, there is a 12 month or more delay before the package is available, leaving people without support or intervention during this period.

The consequence of limited community support is that many people are forced prematurely into residential care. Many are poorly designed to care for people with dementia, with limited areas for wandering, and all are struggling to retain skilled staff.

People with cognitive impairment, either living in the community or residential aged care, who require hospital admission, often find the experience less than optimal. Hospitals are not designed to cope with the high prevalence of delirium in these patients, and staff are limited in time and skills.

Suggested Interventions to improve dementia care

1. Prevention

If we utilised all of the strategies that minimise cognitive decline, we could delay the onset by about 5 years, thereby reducing the prevalence of dementia in the community by about 50%. The nine potentially modifiable risk factors are education, hypertension, hearing impairment, smoking, obesity, diabetes, depression, physical inactivity and social contact.

2. Providing information on services for dementia

It is difficult for older people to find information about activities and services for older age, which includes services for the assessment and management of cognitive impairment. Accessing MyAgedCare is not easy for anyone but more difficult for people who are hearing or cognitively impaired. We need a physical facility in Newcastle to provide information.

3. Assessment in the community

The assessment of cognitive impairment is poorly served by our existing health system resulting in long delays, inadequate assessments and management plans. The complexity of assessment means that it cannot be carried out by one person, whether GP or geriatrician, both of whom should be supported by a skilled nurse or other health professional.

Any effective model of dementia assessment and management needs to be situated within Primary Care. This could be achieved by the establishment of positions of Primary Care Dementia Nurses, employed by Hunter Primary Care.

4. Managing dementia in the community

About half of all people with dementia have a clinical journey complicated by behavioural and personality changes and/or psychotic features, possibly on a background of personality disorder, mental illness or intellectual disability that make case management imperative if families are to cope without major stress, frequent hospital admission or premature residential placement.

5. Assessment and management of confused patients in hospital

HNELHD has a Clinical Guideline on the Care of Cognitively Impaired Older People in HNELHD Hospitals. This should be implemented and monitored.

6. Supported care in the community

The goal of dementia care should be to allow people to remain in the community within their social network for as long as possible. This requires case management to provide PWD, carers and families with appropriate support, accessible information about services and the timely availability of CHSP and Packages at all levels.

7. Residential care for people unable to remain at home

We need Residential Aged Care Facilities specifically designed and staffed to manage dementia, including challenging behaviours. Apart from special design features, staffing should include RNs with special expertise in dementia and behaviour management.

8. Assessment and management of BPSD in the community or RACFs

There are significant deficits in our system to assess and manage behavioural and psychological symptoms in dementia, with services basically outsourced to non-local programs. In addition, we have an urgent need for residential facilities designed and resourced to care for people with very challenging behaviours.

9. End-of-life care

The prevalence of suicide in men over 80 years indicates that we have a long way to go with regard to quality end-of-life care, both in the community and residential care.