Title: The Juggling Act Good practices in community care for older persons living alone with dementia
1The 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
2Overview
- Questions related to good enough care
- The research The Juggling Act
- Communicating with people who have dementia A
case study
3Good 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
4Good 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?
5The 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.
6Dementia 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
7Significance
- 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).
8Significance 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)
9Significance 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)
10The 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.
11Aims
- 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
12Aims
- 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.
14Seven 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.
15Time 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
16Relationship 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(No Transcript)
18There 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.
19Putting 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.
20Putting 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
21Tensions 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.
22Elements 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.
23Elements 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
24Elements 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.
25Elements 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
26Elements 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
27Elements 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
28Elements 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
31Conclusions 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.
32Conclusions 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
33Communicating with people who have dementia