A Project to Validate Guidelines which seek to involve Lay Carers of People with Dementia in Care Planning Processes
Alison Goulbourne, Belinda Dewar, Lindesay Irvine, Helen Riddell
Department Of Health and Nursing, Queen Margaret University College, Edinburgh.
Funded by the Foundation of Nursing Studies
Executive Summary
Background to the project
For the last fifteen years, a central theme of government
health care policy has been to encourage the health service to change
the way it relates to those who use it. Recent health policy documents
(Our National Health: A Plan For Action, A Plan For Change, Scottish Executive
2000, Designed to Care, Scottish Office 1998: Making it Work Together,
Scottish Executive 1999, Making a Difference, Department of Health 1999)
emphasise a move away from competition to a more integrated way of working
that reflects co-operative partnerships. The overall aim underpinning
these changes is to implement clinically effective methods which improve
the care patients, and their families, receive. The net effect should
be the creation of a health service which is accountable to its users
and is responsive to their needs. Implementing such initiatives on a day-to-day
level means users will retain greater control over what happens to them,
reflecting user autonomy advocated by strategies such as 'clinical governance'
and 'clinical effectiveness'.
Since the early eighties, researchers, carers' organisations and other
interested groups have argued for the need for change within the NHS and
community care services to value and provide adequate support for carers.
By investigating the concept of carer involvement in one hospital setting,
a study by Walker et al. (1999) enabled a deep exploration of some of
the main issues highlighted repeatedly in the literature, in particular,
the lack of information given to carers and their exclusion from the decision-making
process. Involvement in decision making is a complex process. Walker et
al.'s study (1999) unravelled some of these complexities in hospital settings
and produced a set of guidelines to enhance lay carer involvement in decision
making for the person with dementia. This project extends this work by
seeking to validate the guidelines with a group of carers who have experience
of working with health care professionals in both hospital and community
settings.
The Project
The overall aims of the project were to:
- emphasise the importance of collaboration in care planning between
lay carers and health professionals;
- inform policy at local and potentially national level to directly
influence principles of good practice;
- generate further knowledge to augment debate surrounding qualitative
processes of inquiry.
The specific objectives were:
- To evaluate the relevance of the guidelines to carers of people
with dementia.
- To differentiate between the degrees of relevance of guidelines
for carers at different stages of the caring continuum.
- To explore the guidelines' fitness for purpose in various community
and hospital settings
- To disseminate with core groups of carers revised guidelines to
carer organisations, local education institutions and local Trusts
Methods
The project team focused on validating the accuracy, relevance and feasibility
of 'carer guidelines' for carers caring for family members with dementia, and
subsequently, disseminating these guidelines to a variety of health/social work
professionals and voluntary organisations. These processes of validation and
dissemination have been established through collaborative approaches to inquiry
with a group of lay carers.
Thirty four carers were invited to participate in the project. Nineteen
were able to do so. Securing a group of carers for this project was not
a straightforward process. Difficulties arose in relation to the following
aspects:
- indirect approaches via gatekeepers
- timing of sampling processing
- difficulty in commitment due to constantly changing circumstances
- possibility of coercion with more direct sampling approaches
- tight time limits which reduces flexibility in sampling.
The carers that we worked with in this project, therefore, were a small
special group of individuals. We acknowledge that what they brought to
the groups may be different from other carers. It is important to note,
however, that the overriding concerns of the importance of knowing the
person with dementia, their expertise in caring going unrecognised, and
their difficulty in having a voice in the health and social care arena
are common concerns of carers that have been echoed in other work.
Of the 19 carers, 15 shared their experiences with project workers in
two separate workshops, and a further four provided written feedback.
The discussion and debate engendered by four concurrent focus groups in
these two workshops enabled appropriate amendments to be made to the guidelines
by the project team. Authentication of these guidelines was achieved through
further analysis by the carers. The carers were in full agreement that
the guidelines were highly relevant and thus vital, but changes did need
to be made to enhance clarification of their meaning and purpose. This
would directly affect the level of transferability to a variety of settings,
such as respite and day care services, home and hospital.
All carers who attended the workshops were sent the five newly constructed
guidelines and analogous questions, together with corresponding rationale
and recommendations to each guideline.
Dissemination workshops were held. The purpose of these was to:
- Evaluate feasibility of guidelines for implementation in a variety
of practice areas
- Identify areas of best practice already in existence which could
facilitate carer involvement in care planning processes for people
with dementia
- Seek out assistance in disseminating and implementing guidelines
in practice areas
- Raise carers' profiles further by offering an opportunity to make
their voices heard in professional fora.
Two dissemination workshops aimed at health care professionals, facilitated
by available carers and the project team, enabled various professionals
to agree the importance of these guidelines in ensuring that:
- carers' expertise is valued and they are more involved in decisions
made about their relatives care;
- the unique and constantly changing needs of an individual with dementia
and their carer(s) are met by an integrated, accessible and streamlined
service
In total eight professional workers from a pool of over 150 attended
the meetings. The professionals were representative of nursing, home care
management, medicine and voluntary organisations. Although more were interested,
it was only possible for two of the carers to help disseminate the guidelines
and share their experiences , thereby raising their profile even further.
Conclusions
This project set out to validate a set of guidelines (Walker et al.
1999) devised to facilitate the involvement of carers in care planning
for people with dementia in hospital and community settings.
Evaluating the relevance of the guidelines for carers of people with dementia.
Involvement in care planning person centred care for the person with
dementia is not formally recognised or acknowledged by professionals.
Indeed, traditional attitudes persist with regard to locus of expertise
and expert knowledge, and so powers of decision making remain with professionals
rather than with carers. Carers' expertise (and so involvement in care
planning processes) is often undermined rather than supported by professionals.
The group of carers in this project (n=19) found the guidelines relevant
to their situation. In particular, they valued the emphasis placed in
the guidelines on the knowledge they had of the person with dementia they
cared for, open communication between different professionals and carers,
availability of contact and awareness, and accessibility of resources.
The guidelines offered potential ways of working with professionals that
fostered an equality of relationship. This would allow them to feel comfortable,
and better able them to assert their needs, with the consequence of enhanced
participation in decision making in partnership with health professionals.
Carers in this project believed that involving them in decision making
would benefit them and the person they care for by ensuring services are
responsive to everyone's needs.
Differentiating between the degrees of relevance of guidelines for carers
at different stages of the caring continuum
Carers of people with dementia in this project had experience of a wide
variety of care settings including, day centres, respite care, hospital
and community care. Some carers were relatively new to this role whilst
others had been caring for many years. Overall, the guidelines were relevant
to carers' individual situations. However, the guidelines propose a key
person to act as both a co-ordinator of services and as someone who knows
the person with dementia well and the carer. Carers welcomed the notion
of a key person to support their emotional and resource needs. It was
acknowledged that in the community setting carers may need several key
people to assist with the multitude of needs associated with caring for
someone with dementia. It was clear that the General Practitioner GP)
had a prime role in initiating and facilitating stability for carers.
Exploring the guidelines fitness for purpose in various community and hospital
settings
From the carers' point of view, the guidelines met their needs. However,
the carers were realistic about the practical difficulties in implementing
these guidelines. These included attitudes and accessibility of professionals,
lack of co-ordination between services, and lack of specialist knowledge
of both caring and dementia. The professionals that attended dissemination
workshops echoed these concerns. Our recommendations attempt to address
some of the potential barriers to putting the guidelines in place.
Disseminating with core groups of carers revised guidelines to carer organisations,
local education institutions and local Trusts
Dissemination of this work to date has been minimal. Despite targeting
a wide professional audience, attendance at workshops was low. Further
dissemination is required together with additional research (see recommendations)
in order to assess feasibility of the guidelines from a professional viewpoint.
The professionals who were able to comment on the guidelines were generally
positive but also noted similar practical difficulties in implementation
as the carers.
This project involved close collaboration with carers. The experience
of involving them fully as participants in the project has presented a
number of challenges common to collaborative ventures. These include,
delineation of roles, differing agendas and practical issues such as the
time required to foster good relationships. Working through these challenges
enabled us to develop strong relationships with the carers which in turn
yielded rich meaningful data.
Recommendations
Recommendations for Guidelines:
Guideline 1: Initiating Contact:
This guideline addressed the importance of professionals making an insightful
assessment of the carer's situation when they first make contact, in order
to receive help and support with the care of their relative. This professional
is usually the GP, and their role as gate keeper to other services accessing
key people was endorsed by carers.
- Raise awareness in professionals and carers of the importance of
establishing a key person for the carer early on in the caring experience.
- Inform carers as to how a 'key person' could support them. This
could prompt discussion, so that carers could identify appropriate
contacts relevant to their immediate and long term needs. It could
also help them identify what services are available (e.g. financial),
as often carers do not know what to ask about or what they are entitled
to.
- Formalise this referral process by establishing internal mechanisms
of contact (GP will refer, key person will then contact carer).
- Establish a 'key person' register to be available in GP surgeries,
and accessible to carers through formalised processes of referral.
The register could include a list of potential key contacts, for example
the name of the social worker attached to the GP practice, what they
offer in the way of support, and how to access them. This register
could then act as an ongoing resource for both carers and health professionals.
Other professionals who could be included in the register include
district nurses (DN), community psychiatric nurses (CPN), day centres,
occupational therapists (OT), sitter services, advocacy agencies,
a range of voluntary agencies and Alzheimer Scotland.
- Provide information, generally available for carers in health centres
and surgeries outlining this 'key person' resource. This would enable
carers caring for relatives with dementia to inquire about this service
during their GP consultation.
- Develop evidence to support the appointment of dementia care specialists
across all community health care settings to take on the role of key
person.
Guideline 2: Maintaining Contact
This guideline addresses the importance of maintaining flexible, open
and negotiated approaches to ensure contact with the key person is effective.
Notably, carers felt the contact with the key person should be accessible,
committed and available.
- The processes involved in establishing a relationship with a key
person should be negotiated mutually and checked out regularly to
make sure they are working (for example, what to do if a problem suddenly
arises, how to feed back information to the key person regarding changes
in care, experiences in respite, needing advice on matters, when is
the best time to meet and maintain regular contact).
- Ongoing holistic assessment of both the person with dementia and
the carer should be undertaken. This should include identification
of any training needs of the carers (for instance, moving and handling,
helping the carer to re-establish their relationship with the person
with dementia .
- Documentation needs to be developed to assist with these processes
(for example, an initial negotiated contract, a diary to record feedback)
Guidelines 3 & 4: Involvement In Care
Guideline 3 reflects the ways in which the carers' expertise about the
person needing care will be valued by different professionals the carers
encounter. Carers will know their expertise is valued because their involvement
in care planning activities will be sought by professionals in different
ways, depending on the care setting. How carers are involved, and the
level to which they want to be involved, will be decided by the carers
themselves, as this too may be dependent upon the care setting or degree
of need exhibited by their relative.
Guideline 4 addresses what involvement entails for carers in more formal
settings (such as case conferences or family meetings), and the support
and communication strategies carers require, depending on their level
of involvement at that specific time.
- Health or social work professionals should actively encourage and
empower carers to participate fully in all processes in which decisions
are made about the care of their relative.
- All carers should have access to advocacy services. Given the tenacity
of deep rooted beliefs about professional expertise, carers may identify
the need for an advocate to support them in their interactions with
professionals, especially at significant points on the care continuum
- such as admission to and discharge from hospital or respite, or
when carers participate in more formal meetings.
- Professionals need to be sensitive to the ways in which carers would
like to be involved in decisions made about care, and the extent to
which they wish to be involved.
- Information needs to be shared between professionals and carers,
and processes for sharing should facilitate open and honest dialogue.
This will help professionals really begin to 'know' the person needing
care, and the little things that make a difference to their relative's
day, for example, what makes them angry, sad, calm, excitable, withdrawn
or participative.
- Professionals should also consider the quality of information they
share with carers, as this will reflect ways in which carers choose
to be involved in decisions about care.
Guideline 5: Making Sure it's Working
This guideline will give carers an opportunity to review how progress
of care and the level to which they are involved contributes to the quality
of care the person is receiving. Ongoing review of care, between carers
and professionals, informs new ways of working, and is crucial in ensuring
the best possible care is given to the individual with dementia.
Evaluation of carer involvement must been seen as an integral part of
the process. As the carer encounters many different situations in which
care needs should be reviewed, each setting should be regarded carefully
to clearly identify:
- what the issues are that need to be reviewed - for example the care
itself and the success of the involvement
- the best method of reviewing these elements.
Recommendations for Policy Makers
- Develop standards from these guidelines that relate specifically
to this process of lay carer involvement. This will allow auditing
and further development. Current standards documents generally refer
to involvement as a philosophy underpinning good practice, but do
not specifically unpick the complexities of the process of involvement.
- Develop a comprehensive database of carers and professionals involved
in dementia care, at local and national level, that is readily accessible
by professional and non-professional people alike to use to develop,
and subsequently increase, potential networking. For example -nurse
researchers would find an accessible network to help them rapidly
secure appropriate sample groups or target relevant professionals
for dissemination purposes.
- Develop a database of professionals and non-professionals interested
in information and networking in relation to dementia care. Work in
establishing such databases is crucial and demands urgent attention,
especially when the ethos of health care purports to value systems
such as 'integrated' or 'critical care pathways' supported by multidisciplinary
teams. Service users' demands for developing efficient and effective
strategies for integrating an accessible and streamlined service is
evidenced by the carers in this project. Establishing such databases
is one way in which integration could be improved.
- Develop a dissemination strategy for project findings. This should
include a wide range of organisations e.g. Consumer Councils, Better
Government for Older people, Older People Projects, Health Advisory
Services, Health Education Boards, NHS Direct and NHS24, and appropriate
websites.
Recommendations for Professionals
- Enable the professional to engage in successful involvement with
lay carers through professional coaching. For example by:
- developing ways in which they can help carers to broach sensitive
issues surrounding an individual's personal needs
- developing communication skills that reflect an equality in the
relationship with the carer
- developing skills in self evaluation
- Recognise opportunities for carer coaching, for example, coaching
that enables carers to be more assertive in their relationships with
professionals.
- Work in close partnership with, for example, voluntary organisations
who have some personal contact with carers.
Recommendations for Managers
- Contribute to, resource and be supportive of carer involvement
Recommendations for Educationalists
- Make more explicit the concept of carer involvement in nursing education
curricula
- Involvement of users in both the planning and delivery of educational
programmes will ensure their perspectives are represented and a culture
of partnership is engendered
- Employ educational methods for facilitation and accreditation of
professional workers in order to promote, implement and evaluate clinically
effective working practices through initiatives such as Work Based
Learning
Recommendations for Future Research and Development Work
- Extend this work to validate the guidelines with other client groups
e.g. stroke, palliative care
- Extend this work to validate the guidelines with other health care
professionals e.g. occupational therapists, social workers
- Evaluate the implementation of the guidelines in practice
For further details and copies of the full report please contact:
Belinda Dewar
The Royal Bank of Scotland Centre for the Older Person's Agenda
Queen Margaret University
Edinburgh
Telephone:0131 317 3575
e-mail: bdewar@qmu.ac.uk
© Copyright The Royal Bank of Scotland Centre for the Older Person's Agenda, 2007
