Kalimera Host Home Respite for Greek People with Dementia

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Kalimera Host Home Respite for Greek People with Dementia This paper was presented at the Alzheimer s Australia National Conference in Sydney 2005 by Sue Leake Respite Service Development- Dementia with the Commonwealth Carer Respite Centre Southern Metropolitan Region Melbourne, Penni Michael Regional Director South/East - Fronditha Care and Aliki Kyrkou CACP Co-ordinator Fronditha Care. Meeting the needs of elderly people with dementia from culturally and linguistically diverse backgrounds is a growing challenge in Australia. One model of respite care which lends itself to this challenge is the host home program. It is with pleasure today that I share with you the development of Australia s first ethno-specific host home program. My name is Sue Leake and I will be explaining to you what host home respite is and how the partnership between the Commonwealth Carer Respite Centre Southern Metropolitan Region, the Flexible Respite Program and Fronditha Care was developed. Also sharing the podium with me this afternoon will be Penni Michael from Fronditha Care who will be exploring the merits of this model for a specific CALD group. And last, but not least, Aliki Kyrkou will be telling you about the fun she has had implementing the Fronditha Care Respite in the Home program and the response from the carers and participants. There will be an opportunity for you to ask questions of any of us at the conclusion of our presentation. What is host home respite? The migration story The family tree of host home respite - from Scotland to Melbourne via Perth So what is host home respite? The Host Home Model of respite care is most easily described as being based on the family day care model. It was first developed in Australia by the Alzheimer s Association of Western Australia in 1997. Who, I might add, have very kindly produced a manual for Host-Home Respite Care which you can obtain copies of by contacting the Association in Western Australia. They actually credit a volunteer based program in Scotland called home from home with the original idea. It was then brought to Victoria by the Brotherhood of St Laurences - Banksia Centre and piloted early in 2000. They too have written a DIY manual however that is yet to be released. The Host Home Model of Respite Care had caught the attention of my colleagues at the Commonwealth Carer Respite Centre who were successful in obtaining a funding grant in 2004 from the Department of Human Services to enable a further expansion of this model of respite care specifically to address the gap in culturally appropriate out-of-home respite for carers of elderly Greek people. As the newly employed Respite Service Development Worker Dementia, it became my responsibility to explore the now 3 different variations of the Host Home model operating in Melbourne.

Features of the Model Environment Size of Group Length of respite Group ownership Cost efficiency What each version of the model shared, were these features. Respite was provided in a home environment not a centre or the carer s home, but actually in the personal care workers own home. The groups were small with 4 to 6 participants. And the respite period was longer than is usually available up to 6 hours compared with the 4 normally offered for in-home respite. The other feature of the model described by service providers was group ownership. By this I mean the development of an identity which distinguished each host home from the next whether it was a men s group or a women s pampering day. The program participants named their group and helped to develop its unique character. And of course there is the bottom line feature of the model. As there is more than one participant and limited overheads, the unit cost of providing the program becomes an attractive way of spreading respite dollars further. This is not to say that the quality of the care is compromised in any way. I wish to emphasise that the workers are encouraged to view their home as a workplace for the duration of the program. Workers should receive supervision, ongoing training, adequate compensation for costs associated with running the program and be required to comply with occupational health & safety standards like any other workplace. Currently the Banksia Centre in Frankston are developing a training program specifically for host home workers. Differences between Models To broker or not to broker Pay, Volunteers and the Personal Care Worker Transport Price Inclusions/Extras What also became clear from my investigations is how the models differed. One service provider brokered the service from a personal care agency. As the service provider didn t employ its own direct care staff, the program coordinator was responsible for assessment and ongoing support to carer s and the people with dementia whilst the personal care agency was responsible for the employment issues. The other two programs directly employed personal care workers to provide respite to people in their own homes. There were also differences in rates of pay, the amount of money provided for costs, the provision of transport or not, the charge to participants, the quality of the meals, the access to resources eg for activities/outings, the level of volunteer support, and the provision of

additional support and respite services e.g. in-home respite, overnight or residential respite, and carer support services. Why this Model? Cultural identity has an important part to play in the well being of all persons, particularly in the life of elders. As people become older there is a corresponding growth in the need to reflect and share with others in their first language. It is well accepted that people with dementia will revert back to their first language regardless of their fluency in English. There are specific issues confronting Culturally and Linguistically Diverse (CALD) elderly and these highlight the critical importance of language and cultural identity in determining effective service delivery especially for people with dementia. Firstly I would like to scope the problem for older people whose first language is Greek Importance of Cultural Identity Cultural identity is important, because it allows and provides for: A sense of belonging, affinity and connectedness to others; Affirmation of who one is; and Meaning to social existence. Hence language becomes critical to the care recipient s ability to exercise a basic human right and meet a basic human need to engage and be engaged by the rest of the world. What does this mean for service provision? Understanding and communication between the carer or service provider and the carer or service recipient is the precondition to: Access to services Assessing needs and responding to these needs in an informed manner. Collaboratively developing intervention strategies to meet needs; Obtaining and giving feedback; and Allowing the service recipient to exercise the fundamental right to be informed and the right to choose. Dementia Care and CALD Elders Cultural specific care is critical to the well-being of CALD elders especially in instances of CALD elders who have dementia because of: Language and cultural differences can and do amplify challenging behaviours through to severe withdrawal and isolation; and

Lack of language and cultural sensitivity lead to misdiagnosis and assessments with instances of CALD elders being placed in psycho geriatric facilities when, in fact, their condition does not warrant such extreme measures. Victoria The most culturally diverse state: According to the Australian Institute of Health & Welfare 1, Victoria has the most diverse older population in terms of cultural and linguistic backgrounds of any Australian state: In 1996 older CALD persons (65 + year olds) constituted 23.1% of the state population of elders. By 2001 this figure increased by 71% reaching 31.8% of the total population of elders. It is clear that those who migrated to Victoria during the 1950 s and 1960 s are now entering the older age group. Within the broad CALD population the demographics for particular ethnic groups demonstrate large growth in numbers. The growth of elders in the Greek community is presented in the following table. 70 Plus Year Olds 1996 2001 2006 2011 2016 2021 2026 Greek 5,557 10,044 16,874 24,172 29,296 30,879 28,931 % Increase over 1996 census 81% 204% 335% 427% 456% 421% Based on Table 7.2: Persons aged 70 and over from culturally and linguistically diverse backgrounds, Commonwealth Planning Region by country of birth, Victoria, 1996 to 2026, Braun, AIHW. The census of 2004 shows that in relation to Greek speaking elders over the age of 70, more than 70% were not able to speak English well or not well. Both research and the experience of Fronditha Care clearly demonstrates that language reversion in later life is very common particularly in the 75 plus age group.

Why partnerships? Mainstream Expertise in backroom functions Resources in program planning and development Established accountable procedures with funding bodies CALD communities/organisations Expertise in responding to diversity amongst communities. Resources in CALD community (volunteers, fundraising, CALD media) Established strong links within their communities which facilitates access How the Partnership was formed The Commonwealth Carer Respite Centre The Flexible Respite Program Fronditha Care So where to go next? At the Commonwealth Carer Respite Centre, we could see the value of a collaborative approach. The Carer Respite Centre with the Flexible Respite Program could provide the carer focus, the skills and resources of the dementia and behaviors program, and the potential for recurrent funding. Fronditha Care had the culturally specific knowledge, additional respite and support options, direct care staff resources, multiple entry points and the capacity to share cost. Most importantly they had motivated and willing staff and a board that was receptive to exploring a new way of caring for its elderly community. The Funding Split 1. CCRC - once off establishment funding Initial establishment costs Carers who are ineligible for Flexible Respite Program funding eg because they live outside the Flexible Respite Catchment or are in receipt of case management with brokerage And some transport costs of any carer who has high need but unable to provide own transport 2. Flexible Respite Program The Flexible Respite Program funds enable access by eligible carers to approximately 52 hours of respite per quarter. Carers of people with dementia living in the LGA s of Port Phillip, Stonnington, Glen Eira & Bayside Carers can be in receipt of HACC services but are ineligible for FRP funding if in receipt of CACP s, EACH, linkages or other case managed program with brokerage

3. Fronditha Fronditha funds the Respite in the Home Co-ordinator who accepts referrals, conducts assessments at the home visits, consults with the Flexible Respite Program co-ordinator regarding all participants accessing Flexible Respite Program funds, monitors, supervises and supports the Respite in the Home workers and liaises with the carers. Target Group Eligibility Criteria Older persons of Greek speaking background Older persons who experience dementia Older persons living at home with the support of the Carer Older persons who are low level care and mobile Older persons residing in Southern Metropolitan areas of Melbourne. Program Outline Location: Bentleigh East Day/Time: Thursdays between 9.30am 3.15pm Cost: $10 per session Includes: Morning and afternoon tea, Greek midday meal and a variety of activities. Transport: Not included Areas for Consideration Tasks relating to recruitment Locate suitable Host Home Initiate referrals and assign clients to program Meals Activities Advertise for positions It was necessary for staff to be bi-lingual and bi-cultural. Fronditha Care employs Greek-speaking Personal Care Workers working in Community Services, so it was quite evident that an internal advertisement relating to the two positions would be the place to start. The respite in the home - host home worker was required to be located in the Southern region to fulfil funding requirements. This position was to be assisted by a Support Worker. Letters were sent to all Community Services PCW s as well as posters being displayed in Fronditha Care`s residential facility which was also conveniently located in the Southern region. The positions required Certificate 111 training in Aged Care, experience in the field, knowledge relating to dementia, abilities in diversional tactics and

dealing with challenging behaviours. As we were familiar with the applicants, their work performance and their strengths, it was easier to match workers to the Program. When the two staff were appointed they underwent training relating to administrative tasks that needed to be completed at each session as well as training around safety and Policy & Procedures. The two staff are continuously supported and undertake training every 6 weeks. Co-ordinators are a phone call away to assist and support the workers. A steering committee has also been established to direct and support the Program. Locate suitable host home From the applicants, there was one PCW who resided in the Southern region so off I went to do a safety check of the home. Driving slowly down this applicant s street I took the time to observe the type of homes that were around and was quite encouraged as I saw flat land and beautiful gardens and at the time issues around access and presentation were circulating in my mind. I come to stop at a home that at a glance would have 12 steps leading to the front entry. However as they say you should never judge a book by its cover. The home was extremely presentable, cosy and welcoming, well lit and airy with an extensive backyard and a well-established vegetable garden which is any Greeks pride and joy and in which many Greeks spend countless hours planting and taking pride in how big their tomatoes grow. The backyard was flat and led directly into a highly accessible back entry with its own parking at rear. So I had hit the jackpot at first strike. In general, the home is a less threatening and confronting environment, especially for those who may be hesitant in accessing assistance and respite services. Not only that but by welcoming the individual and their family s to the host home and simply saying the word Kalimera (so using their own language and cultural mannerisms) you enter that person s sub conscience and help them lose all their anxieties, hesitations and inhibitions about unfamiliar people providing care, which may be the first stepping stone in building their confidence to later access other community based services. Initiate referrals & client selection The Program was marketed to the Commonwealth Carer Respite Centre, as well as local councils and the Aged Care Assessment Teams in the Southern Region. The Alzheimer s Association was also sent pamphlets. The program was deliberately going to start slowly so that we as an organization and the direct care staff could become familiar and comfortable with the Program and get to know each participant and their individual needs. Paying close attention to the mix of participants was also necessary. To date we have assessed and approved 4 applicants, with 3 currently in the Program. The home has a comfortable capacity for 5 participants and 2 staff. Meals The host home worker was provided with a monthly float of $200 to purchase food for each session. The assessment process also drew out the likes/dislikes of each individual regarding diet and foods of preference.

We can all vouch that the worker s kitchen aroused the senses. With traditional Greek food being freshly cooked at each session for their midday meal, it was evident why tummies were rumbling by 12 noon. There was also something special about sharing that meal together- a sense of belonging, a sense of tradition, a sense of enrichment and a sense of family. Activities Initially I approached Dementia Specific Activities officers in our own facilities as well as contacting the Alzheimer s Association to get a sense of what types of activities were suitable for those individual s with dementia. This was coupled with knowledge of what types of cultural activities Greek elderly enjoy engaging in. My trips to Greece and seeing the men in the kafenio and the women in their homes suddenly became useful. There was also a large section of the intake/assessment form dedicated to drawing out what types of activities the individual enjoyed undertaking as well as finding out their past times and histories. This not only created a talking point for the staff in helping to engage with the client, but also prompted the types of activities that could be offered. Activities included: singing and listening to traditional Greek music, reminiscing, bingo, chess, cards, reading from the Greek newspaper and Greek magazines, drinking Greek coffee while partaking in these activities went without saying. The host home also had Greek cable stations which are a talking point for most of the general Greek community (you have to keep up with the Sopies) as well as a friendly dog and cat. The underlying commonality was COMMON LANGUAGE It was also about normalizing activities that would commonly be undertaken in their home environment. Feedback 1. Staff The program is a fabulous idea especially for people who require a friendly and secure environment. The food is fresh and smells wonderful because it is such a small group more attention can be given to each individual. it is a good opportunity for them to get out of their own home it is wonderful to see changes in the individual client over time from being unsettled on the first day to then engaging with us [the workers] laughing and smiling 2. Carers I can do things now that I never used to do before, without worrying about having to keep an eye on him all the time I can now have a shower in peace without fear of him wandering from the home I even get time to do the shopping. Sometimes he returns a little tired though

it is wonderful that I can spend some time with my friends and can trust the people who care for her