A Holiday with a Difference Ballina Dementia Care Training

L. Blackmore and R. Henderson

Introduction Ballina Dementia Care is a Community Options service

which assists 40 people with dementia, together with their family carers and networks in the Ballina Shire. Two project officers have been seconded from the Community Options service, to work on the Ballina Dementia Care Training project.

This paper looks at one type of training offered by the project - training for the family or home based carer.

Previous efforts to offer education to family carers (under the Community Options service) had involved individualised support and counselling, resources for monthly group support sessions for carers, a six week psycho-educational course (Schultz and Schultz 1991), and the wide use of the project’s resource library.

All of these were found to be helpful by family carers, but group meetings and discussions seemed particularly good ways of helping carers help each other. However even with respite available, many carers felt the demands of attending weekly or monthly meetings would out-weigh the benefits of the support and education offered.

Family carer training has been offered in many areas of Australia, but we were aware of only one program which included the presence of the person with dementia (Brodaty and Peters 1991). This residential ten day program involved education and support for the family carer in formal sessions, and care and respite for the person with dementia.

This model of carer training appeared to us to have several advantages:

the carer would not feel the anxiety of leaving behind the person cared for; the carer would have an opportunity to discuss individual difficulties with staff over a period of a few days;

- living together as a group would give the carers more scope to share and learn from each other.

We in Ballina wanted to achieve all of the above, but in a far less formal way, and away from a hospital setting. Our local Alzheimer’s Association support group gave us the idea of a ‘holiday with a difference’ when they arranged a three day holiday to the Gold Coast in Queensland.

The key ingredients of the success of this holiday appeared to be:

- adequate respite for carers; - talking and sharing with each other, particularly

over meals; - a small group; - a holiday atmosphere; -

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being able to take the person with dementia out socially (using the group as a support); and,

- limiting the length of the time away from home. In planning the ‘Holidays with a Difference’, we aimed

to incorporate these ingredients.

Implementation of the Program The ‘holiday’ for four days and three nights was piloted

in December 1993 with four carers and the people they cared for. Four more holidays have since taken place and six more are planned. Publicity of the holidays is targeted at a wide range of community service providers, particularly those who attended the community based training that our project offered. An initial information- gathering form is posted to all inquirers. All relatives are expected to have received a diagnosis of dementia from a geriatrician. Carers were also asked about the background of the person they cared for, and what they liked about that person.

Selection of carers for the holiday is done by the two project officers of Ballina Dementia Care Training, at least one of the respite workers attending the holiday and, if possible, P carer from the local Alzheimer’s Association carers’ group.

Selection criteria is based on the feeling that we can help the carer, that the group of people selected will work together, and that no one carer’s difficulties will dominate the others.

The venue for the holiday is generally the Wheel Resort in Byron Bay, NSW, which offers total access for people with disabilities.

Staff on the holiday are from the Ballina Dementia Training project and our core service. Three respite workers from this service, Ballina Dementia Care, provide daytime and overnight respite. Additional workers are involved on a sessional basis throughout the program.

Funding Holidays are funded through the National Action Plan for

Dementia Care. Carers are asked to pay $26 per couple for the holiday. This sum is the equivalent of the non-means- tested Domiciliary Nursing Care Benefit which all carers on the holiday were entitled to, but only around half were claiming. The total cost of each holiday is around $2500.

The ‘Holiday’ Program The program is designed so that, as well as scheduled

activities such as meals and educational sessions, there is provision for carers to have free time and engage in leisure activities. This flexibility is in keeping with our aim of fostering a holiday atmosphere and helping carers to meet their own needs.

Meal times provide the hub of activity, providing social interaction for both carers and their relatives, a chance for carers to discretely discuss issues with other carers or workers, and a chance for relatives to use their domestic skills if they wish.

Much of the education is offered informally over cups of tea or in the hours after dark sitting around the table, but

Australian Journul on Ageing. Vol. 14. N o . I 31

there are also planned ‘educational’ sessions. The first session encourages the carers to tell their stones to workers and to each other. We are convinced that until carers feel they have done this, they will not respond to any educatiodinformation, however well it is offered.

Other sessions include: - an occupational therapist discussing the

identification and the maintenance of people’s abilities; carers learning about and practising massage and aromatherapy ; carers being led in discussion about their support networks and their caring role; carers being taught the techniques of compiling lifestory books about the person they care for; and, a session with a clinical nurse consultant about the illness itself and the use of medications an alternatives.

Carers are helped to identify things they find difficult or challenging in caring for their person. Workers encourage carers to work on some of these difficultiedchallenges, and assist through explanation, practical suggestions and demonstrations. This occurs both in group and individual sessions.

The holidays do not necessarily aim to keep people at home for longer periods of time. Indeed, for two carers the holiday became a catalyst in helping them to ‘let go’ of their dependent relatives and share future care.

Evaluation Carers were asked to evaluate the holidays, using a

standardised form. immediately after the holiday and again six weeks later. When asked what they’d enjoyed about the holiday carers replied:

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- - the friendly company; - being waited on; - a chance to relax; - no pressure; - -

having a break away from home;

meeting people with similar problems; having sympathetic, friendly and ‘expert’ people to help them; and, delegating care to someone else. -

After six weeks, carers were asked whether they’d made any changes or noticed any changes since returning from the holiday. All said that they had. For some this meant a change in their own expectations or approach; another carer made arrangements for a number of home support services. Most carers said that the holiday had given them practical ideas, had helped them to feel part of a wider caring network, and had provided a supportive environment.

On reviewing the evaluation process however, we feel that the use of standardised forms was perhaps not the best way to get information. Many carers put scant information on the forms but would happily ring up and talk for lengthy periods. With this in mind new methods of evaluation - a Likert scale telephone survey and long interviews or case studies with one carer from each holiday - will be trialled over the next few holidays.

After each holiday there is a debrief with all workers and a review and planning session for the next holiday. Workers have identified the following positive outcomes:

- - the development of camaraderie; - carers enjoying themselves; - carers supporting each other; -

the family carers learning coping skills;

carers being able to communicate with other carers and relatives;

- - carers receiving good feedback from other carers;

carers discovering that help is available and feeling touched that someone cared.

Workers also felt that the informality and the setting

From our own perspective as organisers we have enhanced the educational aspect of the program.

introduced the following over successive holidays; a formal introductory session on anival; a handover time between overnight and day respite workers; time for day respite workers to meet with carers to discuss how relatives coped during outings; a more formalised approach to difficulties identified by carers, with written notes to take home and more follow-up with carers and their local agencies on their return to their own home areas.

Transferability A final positive characteristic of the holiday is its

transferability. However we feel to be successful in other places it needs to be run by people experienced in working with carers of people with dementia, and it needs to offer adequate respite care by experienced workers (or volunteers). There is also the potential for each holiday to be used to provide on-the-job training for a small number of respite workers or volunteers. This year we will also run the holidays in other towns.

Conclusion A holiday environment can be an effective way to offer

training to carers. It offers support and ‘intensive’ hands-on training. It enables trainers to observe how carers undertake tasks, to suggest changes, and to help carers practice new approaches. The development of group cohesiveness assists learning by promoting communication between carers. by allowing workers to reinforce ideas in informal settings with individual carers, and by promoting relaxation. Carers have a chance to unwind without the anxiety of having to leave their relatives behind.

The limits to the likelihood of long-term change in caring practices being achieved after such a short training program need to be recognised. A training program such as this can discuss practical ideas with carers and on some occasions demonstrate them, but we cannot expect them to necessarily result in change.

Carers attitudes are developed over many years and are related to many complex factors including the individual carer’s life experiences, coping mechanisms and expectations. However, this holiday did show that it is possible to influence some carers’ attitudes and approaches to their relatives’ behaviour. However it must be stated that we know of few training programs for community service providers where long term change can accurately be described.

Linda Blackmore is a health educator who has worked in the aged care field for 10 years in a number of roles including health pmmorion. service delivery and training. Ruth Henderson h a a background in social work and rdurotion ond has worked in the welfare indusrw for ten years both in Scotland and Ausrmlio. primarily in ogcd care.

References Brcdaty. H. & Petcrs. K. (1991) Cost effec~ivcness of a training program for

dementia carers scale. lnrcrnarionul Psvchogeriurrics. 3 . 193-204.

Schullz. C. & Schultz. N. (1991) Caring for Familv Curegivrrr Group Lvader Manual. Melbourne: La Trobc University.

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