1 ALZHEIMER’S AUSTRALIA VIC CONSUMER ADVISORY COMMITTEE PERSPECTIVE
Aged Care Assessment Team, Aged Care Assessment Service (ACAS / ACAT) ACAT is an aged care government funded program. It is mostly funded by the Australian government who generate the program systems and protocols for state and territory governments to deliver the service. In Victoria the service is known as Aged Care Assessment Service and there are18 teams of health professionals throughout Victoria. An ACAT assessment works out how well a person is able to cope with daily living activities and self care, and determines which services and assistance a person may be eligible for. These include approval for entry to residential aged care, residential respite care and community care, (other than Home and Community Care services) Community Aged Care Package, Extended Aged Care at Home, Extended Aged Care at Home–Dementia) to assist living at home. A large proportion of people having assessments have dementia. Dementia is a significant condition in precipitating an ACAS assessment—it is reported more than twice as frequently as other diagnoses as the primary health condition1. In fact dementia is 68% of primary diagnoses at Caulfield ACAS in Melbourne2. Victoria wide around 26% of ACAS assessments involves clients who already have a diagnosis of dementia3. This figure does not include those people with cognitive impairment who have not yet been diagnosed. The profile of Victorian ACAS clients continues to age. The mean age of clients in 2008–09 was 82.4 years4. This is significant in terms of future planning for ACAS in that one in four people aged 85 to 89 years and one in two people over 95 years are estimated to have dementia. By 2020 about 98,000 people will have dementia5. 1
http://www.health.vic.gov.au/agedcare/downloads/pdf/acas_vic_report2008-09.pdf p. 20 Personal communication. M, Smith. June 6, 2011 3 http://www.health.vic.gov.au/agedcare/downloads/pdf/acas_vic_report2008-09.pdf 4 http://www.health.vic.gov.au/agedcare/downloads/pdf/acas_vic_report2008-09.pdf 5 http://www.alzheimers.org.au/common/files/NAT/20090800_Nat__AE_FullKeepDemFrontMind.pdf. p.84 2
GOOD DEMENTIA CARE ACAS
What are some of ACAS strengths? Living at home There is no doubt people prefer to live at home with assistance and ACAS can help prevent premature or inappropriate admission to residential aged care facilities. In home assistance is highly valued. Assessment at home creates less anxiety than an unfamiliar environment would evoke. Training and referral for dementia assessment The care needs of frail older people are comprehensively assessed by trained health professionals (for example nurses, occupational therapists or social worker). Assessment staff are trained for broader comprehensive general assessment and also build on specialist skills, such as dementia, through training. Importantly many of these professionals have access to a geriatrician who can help with assessing cognitive problems such as dementia. Managers of each ACAS are networked to share information and knowledge between teams. This provides an opportunity for awareness around the issue of dementia. Consistent criteria ACAS provide criteria for service access and consistency in practice to ensure services are utilised based on need. It is acknowledged that these systems are intended to provide independent, fair and equitable service provision. ACAS is also equipped to deal with crises situations with a priority 1 to 3 response system. Comprehensive assessment ACAS can also promote more co-ordination of aged care and other health services. Referrals from a doctor, nurse or social worker assist in completing a broader assessment. Many people see a doctor with a problem prior to entering the aged care service system. The GP can communicate all the things that are affecting a person. Similarly ACAS has the opportunity to involve the clients and their family carer(s) in the assessment and care planning process. This helps ACAS ‗piece the puzzle‘ together through the assessment process in the home, where they can talk with the client and the family, observe what is happening at home at the time of the assessment, as well as consider background information from a GP or other health professional. Right of appeal One of the strengths of the ACAT program is the responsibilities under the Aged Care Act 1997. This enables a right of appeal if a person disagrees with their assessment. Written instructions on how to appeal the ACAT decision is provided with the letter that is received after assessment. The Department of Health and Ageing has 90 days in which to respond to an appeal.
What is challenging for consumers? Consumers are still confused The ‗service maze‘ continues to be a source of anxiety for people. On top of the physical and emotional exhaustion of the caring role, much energy goes into trying to determine ‗who does what and when‘.
GOOD DEMENTIA CARE ACAS
People access ACAS from different backgrounds and experiences with services. Some come into the service system from Cognitive Dementia and Memory Service, some from doctors, some from hospitals, some from Home and Community Care (HACC) and some with no experience at all. Many only ever access ACAS when they are in crisis, needing residential aged care. People are entering the service system with different levels of knowledge. Clear referral pathways and supported navigation of the aged care system is vital. Some typical example of consumer comments include the following: People are given snippets of info – some people could not cope with the big picture but some people do want the big picture up front. There’s a crisis and then you’re drip fed a little more info. The government has heaps of booklets but if you don’t know what you are looking for then these are not useful. The 6 service is complex, the pathways are not obvious, you don’t know about what services exist . Service providers may know where to refer but do not seem to tell the consumer timely and appropriately.
Assessment fatigue Often people have already had comprehensive assessments and paperwork to contend with prior to accessing ACAS. I had to deal with the district nursing service, Cognitive Dementia and Memory Service, ACAS, Carers Victoria, HACC, Commonwealth Carer Respite centre and Commonwealth Carer Resource centre, Centrelink plus GPs, physician and neurologist…I found this very stressful…a month after my husband came home I was drowning in paperwork and information and going round in circles…if the local 7 healthcare group co-ordinated the services I would not have fallen in such a big heap…
Whilst the Victorian government has developed guidelines for streamlining pathways between ACAS and HACC assessment services to help minimise the number of times clients or their carers have to tell their story, there is still much paperwork that is burdensome. Carer issues result in exposure to many different government departments and services with the perpetual challenge of more coherence across program initiatives. Assessment – identify dementia but don’t pigeon hole Paperwork is a necessary requirement but some consumers found the rigidity of some assessment tools led to the labeling or pigeon holing of the person they were caring for unnecessarily. For example a disagreement, over shutting curtains led to a label of aggression because ‗upset‘ was not a criteria; confusion about a new environment led to documentation of wandering. Once a person has been diagnosed with dementia often generalizations are made when objectivity is required. For example, a person may not be eating due to something other than dementia – gastric reflux or other issues. Behaviours of concern may be in response to the particular environment at the time. A person with dementia is first and foremost a person and they do not wish to be defined by their illness. Just because you have a diagnosis of dementia does not mean you are stupid. 6 7
Ms Judy Hogarth, former carer for her husband who had younger onset dementia. Ms Megan Major, former carer for her husband who had a stroke and Lewy Body dementia.
GOOD DEMENTIA CARE ACAS
Language Many of the concerns of family carers relate to language and how it is interpreted. The language is written for the system point of view but not the consumer. The process adds to the stress as a carer.
In determining care needs, many carers use the example of ―can you feed yourself?‖ This is highly open to interpretation. The care recipient may still be able to put a spoon in their mouth but have no ability to make a meal. Without a carer they would not be able to feed themselves. The person with dementia may have lost insight into their own deterioration and state they are still highly capable of feeding themselves when in fact they are not. The use of the word ‗Team‘ was also questioned. To the system this indicates a multidisciplinary approach but to the consumer can be confusing. Where was the team? My mum wanted to know when the other people were coming because she was only assessed by one worker?
Interpretation of behaviours of concern was also a problem. One carer was told her husband was not eligible for an EACH-D package because he was not aggressive. In this instance behaviours of concern was interpreted incorrectly by ACAS; interpreted as ‗angry behaviour‘. For a carer of someone with dementia there are a number of highly upsetting behaviours of concern including, disinhibited behaviour, sundowning, repetitive behaviours and questioning, agitation, false ideas and hallucinations and shadowing to name a few. I challenge any team that says behaviours of concern only relates to aggression. I had to turn our mains water supply off because my husband was getting up 15 times every half hour to go to the toilet and flush 8 as well as have many showers .
Variation across teams in Victoria - waiting times and service availability Consumers report variation of timeliness of ACAS response across Victoria. Consumers in regional areas argue that ACAS does not have equitable access to a geriatrician. The outcomes of assessment also appear to vary considerably across the teams. Dementia seems to be diagnosed more often in metropolitan than rural areas. Access to a geriatrician should provide more consistency here. System seems crises driven In aged care there is the (often ignored) mantra of getting everything in order and consider future planning. Carers anxious to have their paperwork in place in the event of having something happen to them are often discouraged by ACAS. The ACAS response system prioritizes assisting people in crises, but leaves little response for those people planning in advance. This rightly allows for the crises that do happen but does not alleviate the anxiety of people who are trying to prepare for future likelihoods.
Ms Judy Hogarth, former carer for her husband who had younger onset dementia.
GOOD DEMENTIA CARE ACAS
Furthermore, many people pride themselves on their independence and reliance on service providers is a very foreign concept. People are generally not good at putting their hand up to say they need help and may down play their struggles until they reach crisis point. ACAS can support people in recognizing that they need assistance earlier. Responsiveness to both carers and care recipient The needs of family carers and the needs of the care recipient are inextricably bound. Carers continually ask to be included in the assessment process because people with dementia may lose insight into their reliance on other people to look after themselves. They may also be unaware of the level of carer strain. Behaviours that families may comment on may not be witnessed by ACAS at a morning appointment when people with dementia tend to be at their best (for example, sundowning is a common feature with agitated behaviours, confusion, restlessness and even hallucinations in the late afternoon or evening). It is acknowledged that risks versus rights of the client are a complexity that ACAS and families grapple with. More regular assessment, consultative assessment and review of assessments may be required. Post assessment challenges – so what happens next?? There is often a large gap between assessment to determine eligibility for services and availability of services. Clients are often faced with long waiting lists and/or services that are unavailable in their area. Clients remain distressed as to why they are left in limbo waiting. My friend’s parent was assessed by ACAS for eligibility for CACPS last October . It is now August  and they are still on a waiting list but there has been major detioration so I told them to have another ACAS assessment. They have now been approved for an EACH -D package so they go on another waiting list. They have been so stressed with no support available for the last 10 months. Just yesterday, however, a care provider offered them a package over the phone but they were told that the family would have to financially contribute $50/week in order to be considered. They are at a loss with 9 what to do and what their rights and entitlements are .
A number of consumers have indicated a preference for a system of referral similar to a GP referral to a specialist medical service. Despite waiting times they know exactly where to go next. Why don’t ACAS provide referrals to specific services in their geographical area so clients know who they can access and make arrangements? Sure, they still may have to wait, but they would not feel so powerless. With information about wait times they might choose to make other arrangements.
After the assessment a letter is sent to the client attached to a copy of the assessment. The letter states what services the client is eligible to receive. If the carer does not live with the person, they may never know the outcomes because the client with dementia may lose or destroy the letter.
Ms G. Liavas. Consumer.
GOOD DEMENTIA CARE ACAS
Conclusion and next steps People with dementia and their family carers are empowered if they understand the service system, understand the language and know their rights. Consumers set the challenge for next remedial steps:
Promote more co-ordination of aged and health services. Provide consumers with a list of service providers in their area who offer the services that they have been assessed eligible for.
Reassess language. Be dementia friendly. Include written information explaining the terms used in the assessment letter
Assessment for low level care is required annually. Send reminder to client.
Include the carer in the assessment process and care plan.
ACAS follow up to ensure that the client and carer understand the information and what will happen next? Send a copy of the assessment letter to the carer to ensure that they are informed.
If there is a ‘team’ then consumers expect to see more than one person.
Help minimise anxiety. Crises are incredibly stressful. Support people in recognizing they need assistance earlier.
Acknowledgements With thanks to Maureen Smith, Manager of ACAS Southern Metro, ACAS VIC Chairperson for her contribution to the round table forum.
For further information please contact Dianne Biermann, Policy Officer, Alzheimer’s Australia Vic February 2012
GOOD DEMENTIA CARE ACAS