• National Dementia Conference 2018

A home away from home

Originally published in AJDC December 2017/January 2018 Vol 6 No 6

Jason Burton and Marlene Grogan describe how Alzheimer’s WA has transformed its day respite services with the Enabling Households model that delivers better outcomes for clients with dementia and carers

Centre-based day care services have historically been a block-funded community-based group respite option for people living with dementia at home. The original service model was based on a traditional group social care philosophy: people with dementia living at home came together to spend the day interacting and being entertained.

Whilst this may meet some people’s needs, there has been a growing recognition that this traditional model of day respite does little to support an enablement approach. If a person with dementia is spending up to six hours a day within a care environment, can that service achieve stronger outcomes in terms of supporting the person’s well-being, maximising their abilities and rebuilding their personhood?

How do we develop staff skills and attitudes in order to create an environment that focuses on well-being, enablement and maximum therapeutic benefit? Can this approach give carers greater confidence, peace of mind and improve the respite benefits of such a service?

Answering these questions has led Alzheimer’s WA to transform its day centre services using a new approach that has achieved more significant outcomes for clients and carers.

Alzheimer’s WA’s Enabling Households include Hawthorn House in Albany, which opened in 2013 and is specifically designed for people living with dementia

Creating a better day

One of the most significant barriers to carers accessing out-of-home respite is the belief that attendance at the day centre or overnight respite service will result in negative outcomes for the person attending (Phillipson et al 2013).

If the day centre program and experience does not support the person’s well-being and social connection and is in any way demeaning, or the activities boring, then the person’s experience will be negative. This poor experience negates the therapeutic benefits of a respite break for the carer and they are unlikely to persist with using the service. Stigma, guilt and lack of confidence in the service being able to meet the person’s needs also significantly impact the up-take of respite services (Robinson et al 2012).

The benefits of well-designed day respite services in terms of reducing carer burden, improving carer heath, decreasing carer stress, delaying admission to residential care etc are well researched, with growing evidence of positive outcomes for carers when accessing this type of service (Zarit et al 2013). However, we still don’t know who will benefit the most from out-of-home respite, how different models of day centre service affect the well-being of a person with dementia, and whether there are optimum periods of respite (ie how many days a week attending the centre or how many nights in overnight respite are most effective to support carers and sustain well-being in the person with dementia).

Traditional day centre service models for people with dementia have been built on the concepts of entertainment and large group activity. The clients are seen as passive recipients of the day centre experience, meals are prepared and served up, entertainment in the form of games, quizzes or crafts fill the day and there is little emphasis on the individual, on meaningful activity or on meeting each person’s needs in order to re-enable and support wellness. These programs are often held in large halls or rooms with large groups of participants. Activities are planned weeks in advance and often centred on an occasion or calendar event (eg St Patrick’s Day or some other event that may have little meaning to the people attending).

Alzheimer’s WA has been transforming its day centre model from this traditional service framework to one that embraces a person-centred approach and creates a day filled with opportunities to enhance well-being, create connection with others, support personhood and create meaningful activity opportunities that enable and maximise participants’ abilities. Alongside the service culture change, Alzheimer’s WA set out to redesign the physical environment of its day centres to reinforce the model’s philosophy and create maximum enablement through smart design.

Following many years of studying models, testing different approaches and refining philosophies, Alzheimer’s WA developed and launched its Enabling Household™ model in 2017. It was developed and trialled across Alzheimer’s WA’s three dementia houses in Perth, Albany and Mandurah. The three centres operate both day and overnight respite services and have on average 12-16 people a day living with dementia visiting each household.

The Enabling Household™ model has also, more recently, been used in supporting other organisations’ day centres. In response to the WA community sector’s self-identified need to enhance dementia knowledge and services, Alzheimer’s WA formed a partnership with the WA Government in 2013 to create a dementia-specialist capacity building service to support the sector.

This service, The Dementia Partnership Project (www.dementiapartnership.com.au) has used the Enabling Household™ model in supporting 11 day centres run by other organisations to transform their care environments. It is also being adapted and tested for application in residential care settings in a WA project between Alzheimer’s WA, the WA Department of Health, the West Australian Country Health Service and a number of aged care providers.

The Enabling Household™ model

This model has evolved from the principles and philosophies of a number of earlier models and approaches. It draws heavily on the person-centred work of Kitwood (1999) and Brooker and Latham (2015) to redefine the lived experience of dementia.

Moving beyond the traditional medical stages model of ‘managing dementia’, it takes a revisionary approach to psychosocial needs of the person, their experiences, abilities and the impacts of cognitive impairment. The model breaks down the traditional ‘us and them’ barriers that prevent staff and volunteers engaging as equals with people with dementia and recognising human needs that we all share. It encourages genuine connection and relationships built on trust and an ability to ‘be with’ each other.

Figure 1: Decision collaboration diagram

Taking the human habitat philosophy of the Eden Alternative™*, and adapting it to the living environment of a day centre setting, the Enabling Household™ model changes the environment to a stimulating, familiar space where maintaining the household, being and feeling useful, having opportunity to give and receive care and being engaged in daily activities are critical features. The Eden Alternative™ provided a strong principle-based culture change framework and process. Alzheimer’s WA’s three centres are either fully registered Eden Alternative™ environments or working towards being registered.

In the Enabling Household™, decision making is moved as close to the household member as possible. The traditional institutional management hierarchy is broken down. Household members are involved in decisions and planning for the household and families, and members of the wider community are engaged and become an important support for the service. Volunteers play an important role in the household and intergenerational community groups visit regularly. Figure 1 highlights the close communication interface between all members of the household and the decision-making process that ensures the person living with dementia is closely involved in all decisions. The daily activities for people attending are tailored to each person’s needs, what they find meaningful and opportunities that will enhance the person’s sense of well-being.

Figure 2: Eden Alternative Domains of Well-Being™

The Eden Alternative Domains of Well- Being™ (Whitepaper www.edenalt.org) (see Figure 2), and the subsequent development of this approach by Dr Al Power (2014) have strongly influenced the Enabling Household™ model by providing a framework to measure individual outcomes, develop support plans within an enabling focus for a person living with dementia, and ensure the experience of attending the house leads to positive outcomes in meeting the needs of each individual.

By supporting well-being across these domains a person living with dementia can achieve maximum enablement and a positive lived experience. Carers often note that the improved well-being evident in their loved one after a day in the household is sustained for days afterward. This residual well-being is an important benefit for both the carer and the person with dementia and supports the health and financial objectives that the government has for good care.

The transformation of a day centre into an Enabling Household™ uses a culture change process that has been tested and validated across the three Alzheimer’s WA centres, mentioned earlier, in Perth, Albany and Mandurah. Moving from a traditional, and somewhat institutional, model to an Enabling Household™ model requires significant changes in practice, culture, outcomes measurement, staff skills, staff attitudes and environmental design.

Staff training and development is focused on three key areas: emotional intelligence, skills and knowledge. The competency and attributes-based development program for household staff consists of: training in understanding and reframing unmet needs and behaviour; communication and connection skills; mentorship and reflection time to assist with developing emotional intelligence and understanding what the support worker brings to the relationship; learning circles every day where staff share experiences and ideas; and skills training in dementia specialist areas such as validation, reminiscence, use of music and enablement engagement techniques.

This comprehensive development program ensures staff and volunteers are able to deliver sophisticated, therapeutic engagement and relationship opportunities to clients during their time in the household. The teams are seen as critical drivers to transform the feeling of well-being by creating experiences tailored to the individual.

Through strong relationships between the staff and household member an individualised support plan is developed with identified activities that will support the person’s well-being. These are specific to the individual but may include everyday household tasks that are meaningful to the person and help the running of the household – such as assisting with food preparation, setting tables, feeding the animals or supporting another member – or leisure pursuits that help reinforce that person’s sense of identity, such as time spent in the working shed, tending the garden, enjoying a hobby or heading to the golf course or the gym next door.

Social occasions are spontaneous and encouraged. Morning tea, lunch etc are identified as prime times for social connection and are set up to maximise connectedness as well as opportunities for self-care and care of others. It is not unknown for a morning tea to go for most of the morning if the conversation is flowing, which it often is!

Figure 3 identifies some of the outcome areas for change used to chart this transformation. The households use a number of quality indicators and continuous improvement methods to ensure ongoing development. These include regular Dementia Care Mapping, Enabling Household™ journey tools such as the Dementia Knowledge Assessment Scale, Eden Alternative™ culture warmth surveys, goal attainment scales and environmental audit tools. The households also use regular staff, members and family evaluations and feedback to ensure they are meeting needs and identifying opportunities for improvement.

Figure 3

The physical environment

The physical environment in the Enabling Household™ model plays an important part in maximising enablement, reinforcing the model’s philosophy and providing opportunities to support the domains of well-being.

Alzheimer’s WA’s households represent a range of building types including Hawthorn House in Albany which is a specialist designed new building that opened in 2013; Ellas House in Mandurah, which is a regular house in a local suburb; and Mary Chester House in Perth, which is an adapted traditional day centre building.

The experience of developing the service model across these different sites provides evidence that existing buildings can be adapted successfully to support the model, as well as providing a strong basis for design advice for new building projects.

The Enabling Household™ physical environment is guided by 10 evidence-based dementia design principles (Fleming et al 2013) which provide a strong framework to ensure the environment is as supportive and enabling as possible for someone living with dementia. Critical principles relating to this model are familiarity, size and scale, and respond to a vision for a way of life. The Enabling Household™ model strives for an environment that looks, feels and provides the emotional connection with home, a sense of place that creates comfort, a sense of security and that offers familiar opportunities for meaningful engagement and connection.

Examples of this in the households include kitchens that are the heart of the household and offer free access to all (all meals are prepared in the household kitchens daily), small-scale lounges and spaces for social connection or enjoying solitude, dining spaces set up to encourage socialisation and enablement, furniture and interior design that reflects a home and removes any institutional feeling, and physical and cognitive enabling features that are sensitively designed to support maximum ability but add to the ambience of home. Nature and gardens play an important role and easy access, opportunities for engagement and enabling design features are built into the landscape design.

Figure 4 shows a purpose-built Alzheimer’s WA Enabling Household™ that has two bedrooms for overnight respite and supports up to 12 people plus different social groups visiting during the day. The design allows for easy wayfinding, choice of social spaces, easy access to outdoors and a non-locked environment with the scale and feel of home.

Figure 4

Learning centres

Alzheimer’s WA’s households provide experiential learning environments that support staff development. Staff from external partner organisations are invited to spend up to three days in the household as part of a training and mentorship program. Through immersion in the model, and first-hand opportunities to be involved in its delivery, staff gain a deeper understanding of the operations of the Enabling Household™ and learn how they can take this approach back into their own care environments.

The old adage ‘You have to see it to believe it’ is an important consideration when the sector seemingly faces so many barriers to changing practice and implementing person-centred care.Through exposure to Alzheimer’s WA’s Enabling Household™ environments we are able to show that it is possible to transform care environments within the existing funding framework and constraints, inspiring others to review their services with renewed enthusiasm.

Expanding role

This model provides many future flexible service opportunities. Often traditional day centres only operate for six to seven hours a day, five days a week. This leaves the building under-used for significant periods of time. To begin, Alzheimer’s WA is incorporating short-stay 24-hour respite care into the model in its houses in Albany and Perth.

Participants’ experiences

Evaluations and feedback of the experience of participants in the Enabling Households™ has been extremely positive, with both carer and household members rating the experience as very positive. Importantly, staff rate job satisfaction and feeling valued in their work significantly high. Staff turnover is low. This is an important factor given the projected workforce challenges for the aged care sector and the importance of consistent staffing to ensure relationships can grow between staff and household members.

Volunteer recruitment and retention is strong within the households. Volunteers feel valued and supported in their roles, fulfilling their reasons for volunteering. This engagement is critical in being able to provide increased levels of support to household members with limited funding resources. At Hawthorn House over 390 hours a month of volunteer time provides a valuable enhancement to the household operation and ensures person-centred individualised support plans can be implemented.

“You have to try it to believe it, the relaxed, happy and comfortable feeling you get, it’s an absolutely amazing house with amazing people. It is a safe and happy home” Shirley, household member.

To learn more about the Enabling Household™ and hear from people living with dementia about their experiences of it, watch Alzheimer’s WA’s Dare To Dream video.

ajdc-Author-Jason-Burton-Alzheimers-WA
ajdc-Author-Marlene-Grogan-Alzheimers-WA

Jason Burton is Head of Dementia Practice and Innovation at Alzheimer’s WA; Marlene Grogan is a Senior Consultant with the Dementia Partnership Project, an Eden Associate and Eden trainer. To follow up on this article, contact Jason at jason.burton@alzheimers.org.au

References

Phillipson L, Magee C, Jones S (2013) Why Carers Of People With Dementia Do Not Utilise Out-Of-Home Respite Services. Health & Social Care in the Community 21(4) 411-422.

Robinson A, Lea E, Hemmings L, Vosper G, McCann D, Weeding F, Rumble R (2012) Seeking Respite: Issues Around The Use Of Day Respite Care For The Carers Of People With Dementia. Ageing & Society 32 196-218.

Zarit S, Bangerter L, Liu Y, Rovine M (2017) Exploring The Benefits Of Respite Services To Family Caregivers: Methodological Issues And Current Findings. Aging & Mental Health 21(3) 224-231.

Kitwood T (1999) Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.

Brooker D, Latham I (2015) Person-Centred Dementia Care (2nd Ed). London: Jessica Kingsley Publishers.

Whitepaper: The Eden Alternative Domains Of Well-Being: Revolutionising The Experience Of Home By Bringing Well-Being To Life. Available at: www.edenalt.org.

Power A (2014) Dementia Beyond Disease. US: Health Professions Press.

Fleming R, Crookes P, Sum S (2013) A Review Of The Empirical Literature On The Design Of Physical Environments For People With Dementia. Available from: www.enablingenvironments.com.au

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