Dementia and the person-centred care approach

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1 Art & science literature review Dementia and the person-centred care approach Jessica McGreevy explores the viability of applying person-centred care to people with dementia to go beyond a purely biomedical approach and maximise their wellbeing Correspondence jessica.mcgreevy@fshc.co.uk Jessica McGreevy is a dementia care trainer at Four Seasons Health Care Date of submission April Date of acceptance June Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines journals.rcni.com/r/ nop-author-guidelines Abstract Approaches to care that focus solely on biomedical needs are still rife in dementia; however, a person-centred approach is emerging that focuses on seeing the person. This article explores the literature on person-centred dementia care to determine if it is an ideal rather than a reality. The background to the development of person-centred care is presented with reference to policies in place in the UK. Using the setting of long-term care, the journey of people with dementia is explored at diagnosis, living well and end of life. Keywords dementia disease trajectory, diagnosis, long-term care, person-centred care, task-orientated care THE NURSING and Midwifery Council (NMC) (2015) code requires nurses to treat people as individuals with an emphasis on respect and dignity. The NMC advocates that healthcare professionals must move away from a task-orientated, professional-driven model of care to a more holistic approach that emphasises individual needs (Epp 2003). The Royal College of Nursing (2015) suggests that this shift in clinical practice has resulted in patients experiencing greater satisfaction. To provide this superior level of care, the government developed a national dementia strategy (Department of Health (DH) 2009). It aimed to improve quality of life with a focus on: Timely diagnosis. Dissemination of knowledge. Increased support networks. Individualised care for patients and paid or unpaid carers. The National Institute for Health and Care Excellence (NICE) and the Social Care Institute for Excellence (SCIE) (2006) suggested that this desired level of dementia care was underpinned by the principles of person-centred care. In the UK person-centred care has been embedded in legislative policy and best practice guidance for many years (DH 2001, 2005, 2006, 2009). Tom Kitwood was a pioneer of person-centred care. While Rogers (1961) paved the way for person-centred practices, Kitwood (1997) advanced the theory of person-centred care in the context of dementia. The use of person-centred care developed after the biomedical model was found to address the physiological needs of people with dementia, but neglect their psychosocial needs, leading to undesirable outcomes for them and their carers (Cheston and Bender 1999). Despite this, Burgess et al (2003) highlighted the continuing dominance of the biomedical model in long-term care settings. While biomedical approaches can aid people with dementia, there is support for more person-centred approaches to symptom management. For example, cognitive behavioural therapy can slow disease progression as much as NICE-approved drugs (Mitchell 2013). Also, Gubrium (1987) explained that individual stages of dementia can rarely be identified with progression not always fitting into a predefined biomedical model. Person-centred care in the context of people living with dementia is described as a need to emphasise communication and relationships to maintain a sense of personhood, with a focus on seeing the person (Kitwood 1995). Kitwood (1997) explained personhood as: A standing or status that is bestowed upon one human being, by others, in the context of relationships and social being. NURSING OLDER PEOPLE October 2015 Volume 27 Number 8 27

2 Art & science acute literature carereview Box 1 VIPS model of person-centred care It implies recognition, respect and trust. Brooker (2007) reiterated this definition, stating that care should recognise all human life, be grounded in relationships and provide an enriched social environment that compensated for impairment while encouraging personal growth. Brooker (2007) built on Kitwood s (1997) theory of person-centred care for people living with dementia through the development of a model containing four main elements: valuing, individual, perspective and social psychology (VIPS) (Box 1). Brooker (2007) stated that the four elements can exist independently, but brought together they create the desired outcome for people with dementia and their carers. Although the literature highlights the need for a person-centred approach to dementia care, its introduction in health care faces many barriers, including (Innes et al 2006, McGreevy 2015, in press): Services being budget rather than user led. Poor access to or uptake of training. An embedded task-oriented approach to care that focuses on the illness rather than the person and is reliant on routines and use of medication. Staff attitudes poor recognition that care needs to change. Constantly changing front-line and management staff. Poorly supported front-line staff. Person-centred care throughout the dementia trajectory To explore person-centred care the following discussion is based around the journey of people with dementia in long-term settings. The disease trajectory is simplified using the markers of beginning (diagnosis), middle (living well) and end (end of life). Diagnosis Person-centred care should begin at diagnosis (DH 2001), but barriers to diagnosis include the misconception that dementia is a normal part of ageing, reluctance, stigma and advancing disease (Teel and Carson 2003). Reviews carried Valuing Valuing human lives regardless of age or cognitive impairment Individual Treating people as unique individuals, appreciating their history, personality, preferences, physical and mental health Perspective Understanding the world from the perspective of the person in care Social psychology Social environment is needed that compensates for any impairment and provides opportunities for personal growth, taking into account relationships and surroundings (Brooker 2007) out by Bamford et al (2004), Robinson et al (2011) and Mitchell et al (2013a) highlighted the idea that although a diagnosis of dementia may be devastating initially, it opens the gateway to support networks, allows more time for person-centred activities and advance care planning. Despite this, diagnosis rates vary greatly in the UK, ranging from 42.8% in Wales to 64.8% in Northern Ireland (Alzheimer s Society 2013). Skilled nurses are able to provide an informal diagnosis of dementia based on symptom presentation (Page et al 2008). A formal diagnosis is often not sought (Alzheimer s Society 2013) yet it is vital (Bamford et al 2004). It ensures that decisions can be discussed and made about treatment, services can be accessed and future planning can occur, in turn leading to a person-centred approach to care (Mitchell et al 2013b). As Baker (2015) explained, without knowledge of the individual s specific illness, it is challenging to understand their lived experience, to see life from their perspective and create an environment that is supportive, as required by Brooker s (2007) VIPS model. However, for those who do receive a timely diagnosis and are given education and support, person-centred care is more of a reality with nurses being the main facilitator. The nurse s role in creating person-centred and advance care plans at diagnosis enables people with dementia to communicate their preferences before communication and capacity are altered (Dening et al 2011). Disseminating this knowledge through the care environment allows for the development of person-centred care leading to increased wellbeing for people living with dementia, families and healthcare professionals (Loveday 1998). Living with dementia With the right understanding, support and person-centred approach, living with dementia can be a positive experience (Baker 2015). Healthcare staff are central in providing meaningful relationships, which Edvardsson et al (2008) explained are an intrinsic part of person-centred care. However, in long-term care settings where a task-orientated approach still exists, people with dementia are often left feeling isolated, disempowered and worthless (Innes et al 2006). While their physiological needs are considered, this task-orientated or biomedical approach often does not adequately address their psychosocial needs (Innes et al 2006). If we fail to recognise people s psychosocial needs, in addition to their biological needs, this can lead to them feeling devalued and exhibiting behaviours such as 28 October 2015 Volume 27 Number 8 NURSING OLDER PEOPLE

3 shouting, hitting, refusing care and becoming withdrawn (Kitwood 1997, Brooker 2007). People with dementia who display these behaviours are often unfairly labelled as challenging. This negative label was described by Kitwood (1997) as malignant social psychology, taking away from personhood while further creating a barrier to person-centred care. Overuse of antipsychotic medications, such as chlorpromazine, haloperidol, quetiapine and risperidone, to reduce the occurrence of challenging behaviours can also be a barrier to person-centred care. The Banerjee report (2009) concluded that use of antipsychotics for people with dementia should be reduced and good practice adopted when they were needed. Common side effects of antipsychotic medications include drowsiness, parkinsonism and personality changes, causing the person to become withdrawn and isolated (Alzheimer s Society 2011), in turn preventing the development of meaningful communication and therapeutic relationships (McCormack 2004). Feil and de Klerk-Rubin (2012) explained that by using non-pharmacological approaches (Table 1), behaviours can be understood, triggers identified and further episodes of distress avoided. The behaviours are no longer labelled as challenging, but a way of communicating (Alzheimer s Society 2011). By default, such interventions are person led (Feil and de Klerk-Rubin 2012), resulting in the natural development of person-centred care. Although a person-centred and collaborative approach to care is best practice, McCormack (2004) suggested that nurses continue to retain control over a person s care decisions with the absence of collaboration because they lack skill in balancing conflicting demands and choices. However, in long-term care settings, where these barriers have been overcome, person-centred care becomes the norm with staff unable to comprehend care that is not person-centred (Baker 2015). To break down these barriers, education is required with a focus on time management, communication, leadership and understanding of dementia and the importance of person-centred care (McGreevy 2015, in press). Communication and memory are also important when discussing person-centred care, which relies on (Kitwood 1997): Knowing the person. Where they have come from. Their personal preferences. Personal goals. Daily concerns. As dementia progresses, communication alters and memories become more disordered, making information gathering challenging for healthcare professionals (James 2011). If this information has not been obtained in the earlier stages of dementia, it can act as a barrier, which is often frustrating for staff and people with dementia. However, Baker (2015) suggested that person-centred care can still occur if family members are consulted about life history, preferences and decisions. NICE and SCIE (2006) stated that families who are informed, involved and have open lines of communication with those providing care will be more supportive of person-centred care assisting in making it a reality for the person with dementia. This is a less pure form of person-centred care, as it is reliant on the input of others rather than the person with dementia (Mitchell et al 2013b). End of life It is a basic human right to die with dignity. The Department of Health, Social Services and Public Safety (2010) stated that palliative care requires a philosophy that is person-centred, enabling people to maintain control, choice and dignity until the end of life. However, a review of end of life interventions showed that in 84 studies, where 135 person-centred outcomes were assessed by 97 different measures, only 80 measures were used once and only eight were used in more than two studies, suggesting that although person-centred Table 1 Non-pharmacological approaches Intervention Drama Art Music Dance and movement Reminiscence Life story work Doll therapy Pet therapy Horticultural therapy Validation therapy Explanation Focuses on the use of movement, mirroring, puppets, storytelling and play in a structured manner Focuses on work such as drawing, painting, sketching, collage and photography Seen as a sensory therapy, can be group or one-on-one, receptive and participatory Focuses on movement alongside music Focuses on reliving past positive experiences can be organised or occur through natural conversation A gathering of life history through communication between the person and their family The use of an empathy doll, usually led by the person with dementia and often unstructured The use of animals can be organised or unorganised, focuses on the importance of relationships Making use of outdoor space, working or being in or around a garden Focuses on being accepting of another s reality (Adapted from Douglas et al 2004, Cohen-Mansfield 2005, Hulme et al 2010, Bidewell and Chang 2011, Feil and de Klerk-Rubin 2012) NURSING OLDER PEOPLE October 2015 Volume 27 Number 8 29

4 Art & science acute literature carereview Table 2 The 7Cs of the Gold Standards Framework Communication Co-ordination Control of symptoms Continuity of care Continued learning Carer support Care in dying phase Healthcare professionals to communicate openly with person living with dementia, family and the multidisciplinary team for example, the GP or specialist palliative care services A named co-ordinator to lead the person s palliative care. In a long-term nursing care setting this should be the person s named nurse or key worker in long-term residential settings An important aspect of palliative and end of life care is symptom control so the person experiences the least amount of pain/distress as possible. Also, consideration should be given to the person s psychological, social and spiritual needs, that is, holistic or person-centred care The healthcare professional should inform the person s GP and secondary care teams in advance so they can provide collaborative care at an early point As identified, there is limited knowledge around provision of palliative care. It is everybody s responsibility to ensure that education around palliative care is to an acceptable level This places onus on the emotional and practical care of advocates, family and friends of the person living with dementia. It is also important to note that palliative care continues after death, that is, into bereavement care for the resident s family The final C gives consideration to the death of the person. Previously the GSF advocated use of a protocol for the last hours of life, such as the now defunct Liverpool Care Pathway (LCP). With the discontinuation of the LCP and no obvious recommended alternative, the onus is on all healthcare staff to provide an individual approach to care in the dying phase for example, stopping non-essential interventions, considering comfort measures, psychological and religious/spiritual support (Mitchell et al 2015, in press) care approaches exist, in reality they are not fully used (Wilcock et al 2008). Healthcare professionals do not always associate dementia with palliative care, even though the World Health Organization (WHO) (2012) stated that palliative care is appropriate for all people living with progressive chronic illness. As a result of this lack of recognition, timely planning is poor with discussion about end of life choices often happening in a moment of crisis when physical symptoms take priority, communication diminishes and capacity is altered (Wilcock et al 2008). References Alzheimer s Society (2011) Optimising Treatment and Care for People with Behavioural and Psychological Symptoms of Dementia. A Best Practice Guide for Health and Social Care Professionals. Alzheimer s Society, London. Alzheimer s Society (2013) Dementia Diagnosis Rates. tinyurl.com/n7oasjv (Last accessed: August ) Baker C (2015) Developing Excellent Care for People Living with Dementia in Care Homes. Jessica Kingsley, London. Bamford C, Lamont S, Eccles M et al (2004) Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry. 19, 2, Banerjee S (2009) The Use of Antipsychotic Medication for People with Dementia: Time for Action. DH, London. Bidewell J, Chang E (2011) Managing dementia agitation in residential aged care. Dementia. 10, 3, Brooker D (2007) Person-Centred Dementia Care. Making Services Better. Jessica Kingsley, London. Burgess L, Page S, Hardman P (2003) Changing attitudes in dementia care and the role of nurses. Nursing Times. 99, 38, Cheston R, Bender M (1999) Understanding Dementia: The Man with the Worried Eyes. Jessica Kingsley, London. Cohen-Mansfield J (2005) Nonpharmacological interventions for persons with dementia. Alzheimer s Care Quarterly. 6, 2, Dening K, Jones L, Sampson E (2011) Advance care planning for people with dementia: a review. International Psychogeriatrics. 23, 10, Department of Health (2001) National Service Framework for Older People. DH, London. Department of Health (2005) Everybody s Business. Integrated Mental Health Services for Older Adults: A Service Development Guide. DH, London. Department of Health (2006) Dignity in Care Public Survey. DH, London. Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. DH, London. Department of Health, Social Services and Public Safety (2010) Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland. DHSSPSNI, Belfast. Douglas S, James I, Ballard C (2004) Non-pharmacological interventions in dementia. Advances in Psychiatric Treatment. 10, 3, Edvardsson D, Winblad B, Sandman P (2008) Person-centred care of people with severe Alzheimer s disease: current status and ways forward. The Lancet. Neurology. 7, 4, Epp T (2003) Person-centred dementia care: a vision to be refined. The Canadian Alzheimer Disease Review. 5, 3, Feil N, de Klerk-Rubin V (2012) The Validation Breakthrough. Simple Techniques for Communicating with People with Alzheimer s and Other Dementias. Third edition. Health Professions Press, Baltimore MD. Gubrium J (1987) Structuring and destructuring the course of the illness: the Alzheimer s disease experience. Sociology of Health and Illness. 9, 1, Hulme C, Wright J, Crocker T et al (2010) Non-pharmacological approaches for dementia that informal carers might try or access: a systematic review. 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5 Murtagh et al (2004) suggested that healthcare professionals are poor at recognising when people are reaching the end of life, with many only associating palliative care with the dying phase (Mitchell et al 2015, in press). Palliative care is: An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO 2012). End of life care is: Care for those who are approaching death, with a key goal being to make the person comfortable and attend to their needs and wishes as the end of their life approaches (Kelly and Innes 2010). Palliative care is preparation for end of life care; lack of understanding about this denies the person living with dementia the opportunity to prepare for death, in turn preventing delivery of person-centred end of life care (Morris 2012). A number of tools are available to assist in the delivery of palliative and end of life care for people with dementia. The most widely used is the Gold Standards Framework (GSF), which can be adapted to local needs and resources (Thomas 2011). Its primary aim is to develop a practice-based approach that allows people to die well. The GSF identifies seven steps of palliative care, referred to as the 7Cs (Table 2), which enable healthcare professionals to improve the planning of palliative and end of life care. Using this framework ensures that the person living with dementia is identified as needing palliative care, with timely assessments and better forward planning, allowing care to be person centred. Conclusion Person-centred care is a prerequisite to maximising wellbeing for people with dementia, which cannot be achieved by addressing biomedical needs alone. However, there are barriers to embedding person-centred care in practice. Making person-centred care a reality should begin with a timely diagnosis once the person states it is their preference to know. As the literature demonstrates, diagnosis is not always timely, however, with some people living with dementia but never receiving a formal diagnosis. For those who do receive a diagnosis, person-centred care can be achieved as time allows for planning and input from the person before capacity is altered. However, the literature has shown that throughout the dementia disease trajectory there are many barriers to person-centred care, including: poor education, poor planning, ineffective communication and too many demands on nurses. There should be more education on what person-centred care is, which in turn can be disseminated throughout long-term dementia care settings for the benefit of all. Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared Kelly F, Innes A (2010) End of Life Care for People with Dementia: A Best Practice Guide. Dementia Services Development Centre, Stirling. Kitwood T (1995) Cultures of care: tradition and change. In Kitwood T, Benson S (Eds) The New Culture of Dementia Care. Hawker Publications, London. Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham. Loveday B (1998) Training to promote person-centred care. Journal of Dementia Care. 6, 2, McCormack B (2004) Person centredness in gerontological nursing: an overview of the literature. Journal of Clinical Nursing. 13, 3a, McGreevy J (2015) (in press) Managing the culture change in long-term dementia care settings: introducing person-centred care. Nursing Standard. Mitchell G (2013) Applying pharmacology to practice: the case of dementia. Nurse Prescribing. 11, 4, Mitchell G, McCollum P, Monaghan C (2013a) The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature. British Journal of Neuroscience Nursing. 9, 5, Mitchell G, McCollum P, Monaghan C (2013b) Disclosing a diagnosis of dementia: a background to the phenomenon. Nursing Older People. 25, 10, Mitchell G, Agnelli J, McGreevy J et al (2015) (in press) Optimum delivery of palliative and end of life care for people living with dementia in care home settings. Nursing Standard. Morris C (2012) Advocating for palliative care for an ageing population: living to the end. International Journal of Palliative Nursing. 18, 9, Murtagh F, Preston M, Higginson I (2004) Patterns of dying: palliative care for non-malignant disease. Clinical Medicine. 4, 1, National Institute for Health and Care Excellence and Social Care Institute for Excellence (2006) Dementia: Supporting People with Dementia and Their Carers i n Health and Social Care. Clinical guideline 42. NICE, London. Nursing and Midwifery Council (2015) The Code. Professional Standards of Practice and Behaviour for Nurses and Midwives. NMC, London. Page S, Hope K, Bee P et al (2008) Nurses making a diagnosis of dementia: a potential change in practice? International Journal of Geriatric Psychiatry. 23, 1, Robinson L, Gemski A, Abley C et al (2011) The transition to dementia individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics. 23, 7, Rogers C (1961) On Becoming a Person. A Therapist s View of Psychotherapy. Houghton Mifflin, Boston MA. Royal College of Nursing (2015) Person-centred Care. tinyurl/ocpbzov (Last accessed: September ) Teel C, Carson P (2003) Family experiences in the journey through dementia diagnosis and care. Journal of Family Nursing. 9, 1, Thomas K (2011) Prognostic Indicator Guidance. Fourth edition. GSF Centre CIC, Shrewsbury. Wilcock J, Froggatt K, Goodman C (2008) End of life care. In Downs M, Bowers B (Ed) Excellence in Dementia Care. Research into Practice. Open University Press, Maidenhead. World Health Organization (2012) WHO Definition of Palliative Care. WHO, Geneva. NURSING OLDER PEOPLE October 2015 Volume 27 Number 8 31