Important aspects on preserving quality of life with dementia

Person centred care puts the individual first before their illness in designing their care by valuing the person, maintaining the person’s personal identity, cultural background, personal history, understanding their perspective on the quality of life and involving family and friends as care partners. This type of therapy is considered important in managing symptoms and providing a supportive environment for a person with dementia.

In the lead up to the 6th Annual National Dementia Congress 2015, we had the chance to speak to Michelle Harris, Dementia Consultant of the Bethanie Group, Western Australia on important aspects of maintaining quality of life to people living with dementia. Michelle has been a Registered Nurse for 35 years and her mission is to continue working with all the stakeholders and volunteers to develop and promote their expertise, skills and knowledge in Dementia Care and to experience the joy this work can bring while making a difference in the lives of others. Living well with dementia is her main focus where she strives to translate her knowledge into practice.

We hope you enjoy the interview.

Your experience has included ‘implementing quality improvements into care practices and into the environmental design for residential and community services in WA for clients and their families living with dementia’. What have been some of the challenges that you have successfully overcome, and can you offer an insight into the lessons learnt over the years?
Michelle: My experience has taught me that the individual wellbeing of the clients is the most important aim for all care teams. The wellbeing of a family care partner and the staff is one of the major factors that affects the wellbeing of the person with dementia, the two go together.

Central to any training about dementia there needs to be a philosophy for care that recognises the person first not their dementia and that the language we use is positive and affirming, not stigmatising.

At Bethanie, I have introduced a Dementia Framework which informs our approach to care. I will be talking about this framework and our experiences at the National Dementia Congress.

Any model however is only as good as the passion, drive and determination to make it happen. The challenges are in moving staff from task care to relationship centred care. To achieve this, staff and families must recognise that quality of life is more important than the over utilisation of medications or restraining someone with dementia.

You mention you are ‘passionate about the clients and the care they receive; that it must be holistic not a sub-acute medical model and it must involve the care of the person in a psychosocial and spiritual way’. Are you able to expand on this, and explain the importance of “person-centred” care?
Michelle: Philosophically, the dominant medical model of aged care needs to be challenged and replaced with a focus on the multiple domains of wellbeing. The psychosocial and spiritual aspects of a person’s life are important in order to move beyond treating the diagnosis of dementia to caring for the whole person.
Understanding a person’s unique life history, attitudes and values means we can provide care in a personal way. This enables the person to maintain their relationship with other people and their own self-identity. This reduces boredom and promotes happiness, pleasure and a quality of life.

Can you explain some of the difficulties that professionals working in this area of healthcare face, in order to deliver quality care to people living with dementia?
Michelle: I am fortunate to work with Bethanie. Bethanie is focused on person centred care and has integrated this approach into the organisation’s strategic direction and philosophy of care.

However, in aged care the challenge of caring for a person is complicated by the Aged Care Funding Instrument’s focus on disability and labelling that focuses on what a person cannot do. How do we change a culture to care and support the enablement of a person if we have to keep recording and focusing on what a person cannot do?

There are also difficulties balancing the expected compliance and risk management activities with client wishes. I have seen doctors and nursing teams holding on to traditional medical and nursing perspectives and care workers who are not valued or treated with respect. I have seen catering and domestic teams run homes like clockwork to fit in with their schedules, rather than focussing on the people they care for.

Some providers have focussed on building sterile clinical hotel environments instead of establishing engaging places that feel like home. This demonstrates the over emphasis on risk management instead of quality of life.

In your opinion, what are the most important aspects of delivering care to people with dementia, in order to make a difference in their lives?
Michelle: The most important aspect of delivering care to people with dementia is that they matter.

Feeling like you matter is at core of being a person.

Knowing you matter is at the heart of being alive.

Seeing you matter gives you purpose and maintains your identity.

Without giving too much away, can you briefly explain what you’ll be presenting at the upcoming National Dementia Congress in February 2015?
Michelle: I will be talking about the Bethanie Dementia Framework. There are 6 elements of the Framework:
– Wellbeing, fulfilment and Quality of Life – the importance our attitude towards dementia,
– Environment – what makes a dementia friendly environment,
– Internal and external partnerships – establishing family care partnerships,
– Assessment, Care Planning and Review – focussing on what a person can do rather than what they cannot do,
– Workforce and Training – The value of investing in the staff who care, and
– Communication – The importance of positive language.

I will be giving examples on how we select and modify activities for mild dementia, moderate dementia and severe dementia so that a quality of life is maintained.

Are there any presentations from the 2015 National Dementia Congress that you are particularly looking forward to and why?
Michelle: I am looking forward to the entire congress especially the presentation by Bryce Vissel Head of Neurogenerative Research at the Garvan Institute. He is talking about research advances in dementia diagnosis and treatment.

We are looking forward to Michelle’s presentation on “Living Well with Not Dying in Dementia” at the upcoming 6th Annual National Dementia Congress 2015.