Welsh Assembly Government (WAG) policies emphasises the need to support carers (2000 Strategy for Carers in Wales). However more recently, the National Institute for Health and Clinical Excellence (NICE) emphasizes the need to offer support to people with dementia and their carers in health and social care in the NICE clinical guideline 42 on dementia care (National Institute for Health and Clinical Excellence, 2006). In response to English legislation the Welsh Assembly Government (WAG) produced the Carers' strategy for Wales: Action Plan (2007) it highlighted that in Wales 70% of care in the community is provided by unpaid carers. The document sets out WAG's strategic path for carers; it delivers specific action points that will lead the way forward over the next few years that will help achieve the objectives. Recently the Welsh Minister for Health and Social Services (WAG 2010) consulted on a draft Dementia Action Plan for Wales paper produced by a Task & Finish Group, which highlighted four priority areas that would improve the lives of people with dementia and their families in Wales. As a result of these findings WAG has allocated funding of £1.573m to support the development of Dementia action plans in the years between 2010 - 2012. WAG has also made available a one off funding of £400,000 in 2010/12 to extend services provided by Older Peoples Community Mental Health Teams to develop new Young Onset Dementia Services across Wales (WAG 2010). These services would include appropriate support and assessment of carers.
Prevalence
The Care Standards Act (2000) provides regulation and national minimum standards. These standards are based on service user needs. The purpose of which is to provide a minimum standard, below which no provider may operate. One such provider is
(Adult Social Services) (ASS), currently supports 100,000 adults in Wales. The main provision of ASS is to support and protect those people who would be worse off financially in their absence, by offering community care services and to work in partnership with other providers (ASS no date). ASS provides services to many adult groups. For the purpose of this assignment one group that ASS supports is older people with mental health issues such as dementia and their carers. The Community Mental Health Nurse (CMHN) is part of the Community Mental Health Team that works in partnership with ASS. CMHN's provide specialist skills in Caring for people with dementia and their carers. Dementia has been described by many as being a degenerative decline in mental functioning that equates to having complex needs dependency and morbidity ( NICE 2006, NICE-SCIE 2007). Having such complex needs the older adult with dementia is assessed. This assessment process also involves offering an assessment of needs for the carer. There are mental Health Policy Guidance issued by (WAG 2003) that recommends using an assessment tool called the Care Programme Approach (CPA) the CPA process will be discussed later in the assignment as this.
The Carer
The role and needs of the carer is often overlooked, despite government policies. The carer feels disappointed at the lack of information of support that is available and is not easily accessed. Along with lack of employer support in having time off to take their cared ones to appointments (Carmichael et al 2008). There is evidence to suggest from a carers view that it is an emotional rollercoaster of challenges that stretch the carer to the edge of normal reasoning see Appendix 1(HCWPC 2008). These challenges can cover a wide spectrum. This could include and not be limited to loss of personal space, privacy, and choices due to not having the time. This also disables the carer's ability to think independently as a person as they have very little time to themselves. This can lead to having to deal with the emotional effects of facing the lack of having a meaningful relationship, self love and loss of the ability to know joy. Further emotional challenges can be evoked as friends, family and the wider community withdraw as often they can pick up on the carers' feelings of despair and greater or lesser depressive symptoms. To avoid people catching a glimpse the carer will often put on an 'act' to outsiders even though they are slowly emotionally dying on the inside, through lack of laughter and loss of control of one's self (HCWPC 2008). Therefore it is essential for the CMHN to utilise the skills they have in recognising the individual needs of the carer.
CMHN have their role
Currently in England there are Admiral Nurses who are specialist practitioners in dementia and work in partnership with family carers and people with dementia. In Wales the first Admiral Nurses started working in one county only. Three years later in April 2010 (An anonymous University Health Board) failed to get funding for the service to continue (Dementia UK 2010). Currently the gap in Wales is being met by Community Mental Health Nurse Specialist Practitioners (CMHNSP) whose role is that of team leader. Leading specialist teams that, pick up these patients and carers with complex needs. Specialist Practitioner courses are available through designated universities in Wales. These courses follow Standards for Specialist Education and Practice as set by the Nursing and Midwifery Central Council (NMC 2001). Identifying the needs of the patient with dementia and carer through the CPA draws on the skill of the CMHNSP. These skills will draw on effective communication, listening, counselling and reflective practice skills. (Casement 1985), a psychoanalyst, cited in Johns (2004) Offers a more satisfactory concept of reflection as the ability to dialogue with self whilst dialoguing with a client. He calls this dialogue with self the Internal Supervisor - paying attention to the way the self interprets what the other is saying, and weighing up how best to respond. During the assessment process the CMHNSP will be taking everything into account both as an internal supervisor, and active listener. The CMHNSP should feel positive in using these skills, but should also be aware that negative forces could also be in force. As using both skills could influence the CMHNSP to miss what actually was being said. Rowlinson (2010) warns that whilst actively listening, it is important that a counsellor stops any other kind of distraction. This includes the natural dialogue that everyone has running through their mind constantly. Forming judgments, regarding what is being said, is also a block to actively listening, as is the urge to provide information at, what may be, an inappropriate pause in the conversation.
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The assessment and any encounter with the patient and carer should also lead the CMHNSP to draw on their knowledge of counselling theory skills, and cognitive behavioural therapy (CBT) interventions and as an informal helper, this forms part of the CMHNSP's everyday interventions with both patients, and carers. CBT is a short-term talking treatment that has a highly practical approach to problem-solving. It aims to change patterns of thinking or behaviour that are behind both patient and carer's difficulties, and so change the way they feel. Mind(2010). ( Mention CBT)
Collins (2003) In response to a questionnaire, nurses responded that CBT enabled them to offer clients unconditional positive regard. The relationship that developed between the client and nurse helped the nurse to identify and respond to the needs of the client in a much more empathic manner. During any intervention with a patient with dementia and their carer would need careful non judgmental management. The CMHNSP would draw from their knowledge of counselling interventions that they had learnt and use these to offer the carer much needed support, to enable them to move forward and allow both patient and carer to make informed decisions about their care needs through the CPA assessment process. Along with an assessment of needs of the carer as their own needs are often overlooked or hidden by the carer. (Ref Required)
During any dialogue with the patient and carer as an Internal Supervisor, the CMHNSP would make a mental note that careful documentation of any conversation would be needed using patients own words where appropriate. Where specialist assessments are carried out notes would be taken during such interventions to capture intricate details. (ref to KG something) Taking time out to think about and plan what needs to be written in the notes would also allow the CMHNSP to make sense of the situation through reflection whilst recording the intervention in the case notes.
Keeping good records forms an essential part of nursing and midwifery practice, and instigates the provision of safe and well-organized care. It should form an essential task not to be missed even if there are time constraints NMC (2009). Encouraging the Carer to make their own notes will help them in reflecting on the issues and decisions that need to be made. Part of the CPA assessment involves both the patient and carer taking part in writing there own care plans. This process breaks down the issues at large into smaller stepped targets which can set clear achievable goals. By breaking down the items increases the chances of success and goal achievement (Kottler et al 2008). Patient's records are just as important if not more so than the practitioners records. Patients obtain useful information that they can use both during and after the counselling Nelson-Jones (2002). Goals 'pop' into the conversation often not being noticed by the person seeking counsel often needing the helper to point out the goals Tschudin(1995). Therefore providing the patient and carer with specialist knowledge or assisting them in knowing where to find it may help the patient and carer to see their situation in a different light and thus provide a basis for action. (Elgan 1994) Cited in, Freshwater (2003) Elgan argues that information sharing skills are challenging as they can compel the patient and carer to see themselves and their situation quite differently. For this reason he urges a sense of caution and tact when using information-sharing skills Cited in, Freshwater (2003). In the case of diagnosis and dementia there is evidence to suggest that the sufferer may not want the immediate family or friends to know and it can also work the other way around, so tact is required when collecting what could be sensitive information (Ref disclosure of diagnosis required).
Listening is an important feature and is made up of many components, in order to effectively communicate both ways. The CMHNSP should allow for this by pausing, being attentive and allowing time for both the patient and carer to speak. Bayne.et al (1998:42) suggests that 'The first quality that anyone needs who wants to help another person, or hear what needs to be said, is attentiveness'. A successful counselling relationship can be instigated by ensuring a safe environment, somewhere where there is privacy and free of intrusion. Asking do they feel comfortable in the environment to go ahead with the assessment or intervention? During the intervention giving reassurance to both patient and carer to take their time when answering any questions shows that the CMHNSP can be empathetic. By doing this it creates an atmosphere that creates a therapeutic relationship and with this comes the willingness of the Patient and carer to participate at each phase of the relationship. These Phases are discussed by (Roach 2001) who suggests that the therapeutic relationship Development process where 'trust' is developed is seen as the first stage there are two more, Working phase where 'goal setting' takes place and Terminating phase which is self limiting and where the patient and carer might achieve 'independence', if this last phase is not met then the phases can be cyclic in action and the process can continue.
At times the CMHNSP needs to be aware that carers charge may be present, during certain aspects of the assessment or intervention and need to be sensitive to this fact and to be aware that either the patient or carer may be holding back information either one would not wish the other to hear. For example Silence during the dialogue by either party. Recognition of this non-verbal communication instigates sensitivity on the CMHN's part. At other times of silence the CMHNSP should pause, allowing both the patient and carer time to reflect so they could collect their thoughts and emotions. Furthermore the CMHNSP could when appropriate radiate that they too are human, by appropriately self disclosing. In context to the discussion the CMHNSP could recall a time when they felt the need to write things down to help them to remember. Through showing this sensitivity the CMHN would be able to build on a trusting relationship and nurture good communication by sharing similarity.
Nelson-Jones (2002:223)The ability of counsellors to be real is very important for assisting clients to experience feelings. Rogers used terms like 'congruence' and 'genuineness'(Rogers, 1957;1995). Existential psychologists use terms like 'presence' and 'authenticity' (Bugental, 1981;May, 1958; Mayay & Yalom, 2000). Bugental views presence as consisting of an intake side called 'accessibility', allowing what happens in situations to affect one as a person , and an output side called 'expressiveness', making available some of the content of one's subjective awareness without editing.
On each engagement with the patient and carer the CMHNSP would gradually encourage both to become more aware of their situation where appropriate through exploration and expression of feelings. This would empower and enabled them both to move from one place to another. Allowing them as an individual to explore in this way, would enable them both to decide how they would move further forward. This process would be helped through goal setting as mentioned earlier within the care plan as auctioned by the CPA. Albert Einstein observed, "The significant problems we face cannot be solved at the same level of thinking we were at when we created them". Cited in Covey (2004).
The CMHNSP needs to be aware that the carer initially could be holding back due to their charge being there. As the assessment progresses this might not be the issue, further active listening could draw out the more prominent issues. It is important to identify how the carer are they blaming themselves do they feel hopeless for not managing the changes in their charge or cared one. These expectations carers sometimes have of themselves could hide further issues they are not yet ready to address. These could be grief, loss and change. Firstly the carer could be vaguely grieving the loss of the person, mother, loved one they once knew due to Dementia. "You are losing and grieving while you're providing the care, because Charlie isn't Charlie anymore," Frank (2008). Frank goes on to say that studies were undertaken and found that "The fundamental barrier experienced by Alzheimer's caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues," further more Frank hopes the study results can be used to help design new support and intervention programs for dementia caregivers. There has not been much change in the treatment options for dementia patients in the last 20 years but there are policies in place to decrease the burden of carers. (REF Required). Secondly the carer could have further issues such as the changing of their role from Son or daughter or husband to main carer, and decision maker.
Here the CMHN would feel empathy for the carer, and want to help them, not being judgmental but offering unconditional positive regard (UCR). Unconditional positive regard, a term coined by the humanist Carl Rogers, is blanket acceptance and support of a person regardless of what the person says or does. Rogers believes that unconditional positive regard is essential to healthy development. (Ref required).
There is an important skill that CMHNSP should develop in recognising that through the reflective process it can became evident that the CMHNSP could also be avoiding the issue of the carer grieving the loss of the person they once knew. It is important to reflect on such feelings. If this is the case after further analysis the CMHNSP might feel that they were out of their depth in that area of counselling and should refer the carer on to a specialist.
Dryden et al (1994:15) said 'Think of developing your referral skills as a positive enhancement of your overall practice. Lazarus, a therapist of considerable experience and standing, uses referral (which he considers a 'technique' in its own right) for a variety of reasons, not least of which is the recognition of his own non-omnipotence'.
Seeking clinical supervision on this identified need through reflection of practice enables the CMHNSP develop their clinical practice weaknesses into stronger coping strategies that will enable and instigate the CMHNSP to further develop their role, through seeking effective evidence based practices and action researching the these practices in practice under clinical supervision. Evidently the role of the CMHNSP is constantly cyclically evolving using such research methods.
The conclusion should draw together the main strands of the discussion and suggest implications for the development of clinical practice and research on assessment and intervention skills in the profession.
Appendices
Appendix 1
During our visit to Australia, we were shown the following "job advertisement" for the post of "carer" by the Chief Executive of Carers New South Wales. It had been written by a carer. We reproduce this here as an illustration of how some carers see their lives.
Critical role for self starter for hands on role:
Experience in first aid, counselling, occupational health and safety, pharmacology, cooking, cleaning, communication skills, stress management and ability to self medicate may be required.
The successful applicant must be able to forgo personal privacy and the choice to do what you want.
You will be required to lose your independent thinking ability and become invisible to the community at large.
The successful applicant must be able to endure the lack of joy, self-love and relationships indefinitely.
Must also be able to function alone as friends leave due to your state of depression.
Although entitled to holidays, the successful applicant will not usually be able to have them due to lack of support or financial difficulties.
The successful applicant must be able to function credibly with a smile while dying on the inside from lack of laughter due to losing your mind.
Reassessment qualities are essential while you lose your sense of self, your reasons to get up in the morning, your dress sense, your hair and your sense of humour and identity.
The successful applicant may be required and therefore willing to move home to accommodate the client and be happy developing bad nerves and anxiety 24/7.
The successful applicant may be required to fight every day to remember five things to be grateful for while letting go of everything held dear. Must be able to let go and find comfort in a state of being stunned.
The successful applicant must be able to cope with slowly going insane and back on a continual basis. The successful applicant must learn to live in silence to enjoy this truly challenging lifestyle.
(House of Commons Work and Pensions Committee Valuing and Supporting Carers
2008).
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