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The Juggling Act Good practices in community care for older persons living alone with dementia

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Title: The Juggling Act Good practices in community care for older persons living alone with dementia


1
The Juggling Act Good practices in community
care for older persons living alone with dementia
  • A research report
  • A collaborative research project by
  • Catholic Health Care Services and
  • The University of Sydney
  • Fran Waugh
  • Lindsey Napier
  • Michelle Bonner
  • 2004

2
Overview
  • Questions related to good enough care
  • The research The Juggling Act
  • Communicating with people who have dementia A
    case study

3
Good enough care
  • Competing values, ideologies, theoretical
    perspectives underpin what constitutes good
    enough care with older people in policies and
    social work practices.
  • what is acceptable care
  • what constitutes harm to older people
  • rights of the older person
  • rights and responsibilities of the main players
    and
  • the role of society in particular the state in
    protecting older people

4
Good enough care
  • What is the capacity of communities to provide
    ageing in place for people with dementia who
    are home alone?
  • What capacity do we have to communicate with
    people who have dementia?

5
The Juggling Act
  • The aim of the research was to document Mercy
    Community Care staffs experiences and
    understandings of the Dementia Monitoring
    Program, a program that targets older persons who
    live alone.

6
Dementia Monitoring Program
  • Commenced in August 1998
  • An innovative aged care program providing
    intensive support for people who experience
    dementia and live alone
  • The DMP offers a service to people who have
    confusion associated with memory loss, dementia
    or a mental illness who live alone or who live
    with someone who cannot function as a carer

7
Significance
  • Few studies have examined the practice issues
    surrounding the care of people with dementia who
    live alone (Harding and Palfrey 1997).
  • This group who live alone are more likely to be
    poorer, to be women and less likely to use health
    services (Webber, Fox Burnette 1994 Tuokko,
    MacCourt Heath 1999 Verghese, Auclair, Katz
    Lipton 2001).

8
Significance continued
  • There is evidence that this group only become
    known to health and welfare services when there
    is a crisis (Reynolds, Kendig, McVicar, Rigneveld
    and OBrien 1993 Newhouse, Niebuhr, Stroud and
    Newhouse 2001)

9
Significance continued
  • Future Directions for Dementia Care and Support
    in NSW 2001-2006 (NSW Department of Ageing
    Disability and Home Care 2002, 23) identifies
    that people who live alone with dementia are less
    likely to receive service provision and therefore
    strategies for early assessment and intervention
    need to be developed.
  • It is important to consider how to best deliver
    services to these people in order to assist them
    to remain in safety in the community for a long
    as possible. (Webber et al. 1994,13)

10
The research
  • Explored current practices of MCC practitioners
    who are involved with this client group.
  • Sought the views of MCC practitioners on what
    constitutes good practice and how that can
    address the needs of people with dementia who
    live alone.

11
Aims
  • Few studies have examined the tensions for
    professional practice surrounding the care of
    people with dementia who live alone
  • This preliminary research project aims to expand
    this body of knowledge by developing an
    understanding of
  • What constitutes the critical events/times/episode
    s in an persons life?
  • The key factors that influence workers decision
    making at critical times in an persons life

12
Aims
  • Practitioners use of professional discretion
    when assessing and providing for the ongoing
    welfare of the person
  • Practitioners perceptions of the adequacy,
    flexibility and responsiveness of the formal
    (official) and informal (family, friends,
    community) sources of social support to people
    with dementia who live alone
  • What practitioners consider to be the key
    elements of good practice in working with
    people with dementia who live alone and
  • The influence of organisational values on
    practice.

13
An initial qualitative research project
was undertaken, focussing on the Dementia
Monitoring Program (DMP) at Mercy Community Care
(MCC), a division of CHCS based at the Waitara
and Crows Nest sites. In-depth interviews were
conducted with five MCC staff.
14
Seven major themes were identified with respect
to
  • Time and timing of service delivery
  • Relationship with the person with dementia
  • There is no such thing as the typical case
  • Putting safety at risk
  • The tensions between different perspectives
  • Elements of expert professional practice and
  • Scope and limits.

15
Time and timing of service delivery
  • Timing of service delivery within DMP aims to
    ensure the person with dementias choices and
    desires are respected and central to any proposed
    intervention.
  • Once the persons needs are assessed, a care
    plan is developed in consultation with the person
    with dementia and their family.
  • Referrals are made to a range of community and
    health services and the situation is monitored by
    the DMP outreach worker

16
Relationship with the person with dementia
  • The staff report that their relationship with the
    person is central to the level of support,
    particularly the services that the person will
    accept.
  • The skill of the staff in engaging the person
    with dementia is important as it is used as the
    basis for encouraging involvement with relevant
    services
  • MCC staff not only focus on their relationship
    with the client but they assist the client to
    make sense of and negotiate the other multiple
    contacts

17
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18
There is no such thing as the typical case
  • MCC staff state that there is no such thing as a
    typical case as they respect and respond to the
    particular needs of the unique individual.
  • People with dementia experience a whole spectrum
    of issues
  • isolation, paranoid or wandering behaviours,
    difficulty with communication and understanding
    varied insight into their day to day living needs
    and diminished ability to meet their own needs to
    live independently.

19
Putting safety at risk
  • The interviewees all identified factors that
    placed a person living at home alone at risk of
    either harm or neglect.
  • Some factors related to the behaviour of the
    person or the behaviour of other people
  • The interviewees all raised the issue of how
    vulnerable people with dementia living alone are
    to financial exploitation.
  • This vulnerability also extends to the risk of
    emotional and physical harm.

20
Putting safety at risk
  • The interviewees identified a number of critical
    times in the lives of the persons with dementia
    who live alone which place them at risk.
  • These were the time of diagnosis
  • changes in the persons behaviour
  • decline in their physical health
  • diminishing independence and the degree of
    informal carer involvement or
  • formal service supports

21
Tensions between different perspectives
  • Having to make decisions about the persons
    health, safety and well-being at critical times
    is a key responsibility of the staff. All the
    staff attempt to involve family members in these
    decisions as well as any other caregivers such as
    neighbours.
  • Other services involved in the persons care eg
    GPs, ACAT, Guardianship, case manager from other
    programs, are also consulted.
  • Staff involve the person with dementia in these
    decisions in a way that is meaningful to them.

22
Elements of expert professional practice
  • Working with people with dementia living alone
    involves a number of challenges and complexities
    for workers
  • three key elements that emerged from the
    responses given by the interviewees social
    casework social systems work social policy
    work.

23
Elements of expert professional practice
  • social casework
  • Gaining access to the persons house
  • Establishing a connection with the person
  • Assisting the person to accept services
  • Addressing ongoing safety issues for the person
  • Promoting the persons quality of life
  • Involving family and neighbours in developing
    case plans and regular reviews
  • Advocating for the person to ensure their voice
    is heard, especially if transition to residential
    care is required

24
Elements of expert professional practice
  • social systems work
  • Ensuring suitable competent, trained direct care
    staff are available
  • Addressing occupational health and safety issues
  • Ensuring organisational support for direct care
    workers such as debriefing, supervision,
    opportunities for professional development and
    ongoing training
  • Liaision with other key services, such as the
    Aged Care Assessment Teams, contract services and
    the Guardianship Board.
  • social policy work.

25
Elements of expert professional practice
  • social policy work
  • Increasing the body of knowledge about dementia
    across all levels of direct care
  • Increasing funding for programs for people with
    dementia
  • Increasing the capacity of the DMP to be able to
    monitor on a daily basis for people who are
    deemed to be at increasing risk and whose
    condition is deteriorating
  • Staff have opportunities for training and are
    adequately remunerated

26
Elements of expert professional practice
  • social policy work
  • A collegial approach in developing holistic,
    integrated care pathways for the people who live
    alone with dementia. This will address the
    current fragmented nature of the services which
    are currently offered to persons with dementia
    who live alone
  • All services to adopt a person-centred philosophy
    so the persons wishes can be taken into account
    in any decisions which affect their lives

27
Elements of expert professional practice
  • social policy work
  • Education of the network and community supports
    making sure there is an identified pathway of
    referral of people with dementia and referrers
    are very clear on how to do that
  • Early referral of persons with dementia
  • Increased education for GPs about relevant
    services for people with dementia who live alone

28
Elements of expert professional practice
  • social policy work
  • GPs who are willing to conduct to home visits
  • Increasing knowledge about the key factors in
    risk management and
  • Extending the police register for people who are
    at risk because of dementia.

29
Conclusions
  • This high risk client group provokes much anxiety
    for the community of families, friends and
    neighbours and the community of health and
    welfare practitioners.
  • There is constant pressure exerted and
    experienced to admit this vulnerable client group
    to safe, protected residential care.

30
  • This may be at odds with the idea of choice, the
    espousal of person centred care and the perceived
    wishes of clients themselves.
  • Networks of services cooperating with and
    complementing each other are essential to support
    an acceptable good enough quality of life for
    this high risk client group to remain at home

31
Conclusions continued
  • Partnerships between the many key services and
    care providers is essential as they wrestle with
    the tensions between the understandings of what
    may be in the older persons best interest and
    what is understood as the persons wishes, in a
    constantly unpredictable situation.

32
Conclusions continued
  • Further research could produce better
    understanding of how this group of citizens
    experience the concerted and multiple efforts of
    all the players to provide person centred care in
    differing settings

33
Communicating with people who have dementia
  • A case study
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