DCRC: Dementia Collaborative Research Centre

Client: Australian Department of Health & Ageing

Centre: Australian Centre for Evidence Based Aged Care

Start year: 2010
End year: 2013

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In collaboration with QUT, Griffith University, Alzheimer's Australia, Hammond Care, Curtin University: Responding to sexuality in residential aged care facilities; Families and acute care; Experience and processes for decision-making by direct care staff in residential aged care facilities when the person about whom decisions are to be made has a diagnosis of dementia; Social participation and carers of people with dementia (with the Institute for Social Participation); Everyday decision-making - the experience of people living with dementia; Knowledge translation; Quality of life and care for people with dementia in residential aged care facilities.

Responding to sexuality in residential aged care: The development of an assessment tool for people with dementia

Expressions of sexuality by people with dementia present a number of challenges for residential aged care service providers and there is little information available to guide practice. This project developed an assessment tool to guide staff and improve care practices related to sexuality and dementia in residential aged care facilities. This tool’s content was developed and validated using a consensus based research method using a wide range of experts in the field.

The social participation of carers of people with dementia

Specifically, this project will make a unique contribution to policy development on social participation and how it relates to carers of people with dementia. This project will identify the social barriers and enablers to social participation for this group. This study aims to identify the ways in which the maintenance of social participation has the potential to improve the quality of life and health of carers, which in turn, has the capacity to assist care-giving of people with dementia.

This research will establish the framework for further studies into social participation for carers of people with dementia, including the development and testing of a valid social participation measurement tool for this particular population group.

Everyday decision-making: the experience of people living with dementia

The capacity to understand, represent one’s values and preferences and most importantly, feel involved is integral to personhood and wellbeing. While decision making can be affected by dementia it does not necessarily follow that the person lacks the capacity to make, or at least participate in, decisions. In fact, research has consistently demonstrated that people diagnosed with dementia can, and do continue to make choices about many aspects of their lives. Too often, however, a person with dementia’s participation in decision making is curtailed or ignored by others as it is presumed that they know what is in the person’s ‘best interests’.

Phase One of the project aims to explore the essence of decision making when a person has a diagnosis of dementia. The thoughts and feelings of individuals with dementia are seldom prioritised in existing research and there is little understanding of what decision making means to them. In Phase Two, the project will identify the ways that family carers can support and facilitate decision making for people with dementia.

The experiences and processes for decision making when the person about whom decisions are to be made has a diagnosis of dementia

The aim of this project was to explore the experiences and processes of decision-making by direct care staff in residential aged care facilities (RACFs) when the person about whom the decisions are to be made has a diagnosis of dementia. Despite the abundance of studies on autonomy within RACFs, there is little information on the experiences of decision-making by staff when making decisions on behalf of people with dementia under their care. A deeper understanding is needed of how they view decision making for people with dementia, and how and why they determine whether a person with dementia can or cannot make a decision for themselves. This study attempted to provide some insight into this important aspect of care.

Family involvement in care of people with dementia in acute care

Time in hospital is known to have an adverse effect on the health of care staff with special challenges, such as caring for the individual’s personhood and managing behavioural and psychological symptoms. One of the important factors that define quality care for people with dementia is the important role of the family carer in enhancing the care experience of their relative. While there is growing evidence to support the positive role of family, there is limited knowledge on the extent to which families are included and valued in the care relationship in the acute care setting.

This study interviewed family dyads (person with dementia and family carer) and staff to explore the role and needs of the family carer who had a family member with dementia cared for within an acute care setting. It explored staff attitudes to family involvement and the means by which the role and needs of family carers can be facilitated. Increased knowledge in this area will provide a basis for determining the need for interventions which promote family involvement in acute care settings as well as the development of models of family engagement in acute care for people with dementia.

National Quality of Life (QoL) in people with dementia

Dementia is a chronic illness without cure or effective treatment. As it progresses, it results in declining mental and physical function, such that people with dementia inevitably depend on assistance from others to manage everyday tasks. Maintaining a good quality of life (QoL) thus becomes dependent on the actions of those who provide that care. Some people with dementia will require admission to a residential aged care facility (RACF: hostel or nursing home). Currently more than half of all residents in RACFs have dementia, and amongst nursing home, people with dementia comprise 83% of the residents. However, despite these figures, research into QoL of aged care facility residents with dementia was rare until the last decade. This is mostly due to a belief that it is difficult to determine QoL for this group of people, particularly from their own perspective.

This project will be partly based on a large and detailed study conducted in the USA, and it will form the first extensive study of QoL for people with dementia in Australian RACFs. We propose to run the study in five states and one territory (Queensland, New South Wales, Victoria, West Australia, Tasmania and the ACT). Collecting information from approximately 480 residents from 48 RACFs in total (10 per state, except for TAS (5) and ACT (3)). We will target facilities from different areas (metropolitan, regional and rural) and provider types (profit, not for profit, government), with the number of residents sampled from each facility ranging from 5-15 depending on its size. To gain an in-depth understanding of QoL and the factors that affect it, we will be gathering different types of information from a range of sources.