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Dementia – a tainted diagnosis?

An overview of the literature

relating to stigma and diagnosisAlison Kilduff Head of Mental Health

Nursing, School of Nursing and

Professional Practice, College of Health

and Social Care, University of Derby. UK.

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Context and aim of the review

• This presentation provides a review of the literature on the reality of living with a diagnosis of dementia in terms of stigma and ageism, and their effects on care.

• The Alzheimer’s Society (AS) position statement on Equality, Discrimination and Human Rights (AS 2012) proposes that discrimination on the grounds of age is just one example of exclusion that people living with dementia face (PLWD) from all levels of society.

• AS assert that simply by having a diagnosis of dementia many infringements are made on an individual’s right not to be treated in a degrading or inhuman manner and that human rights with respect to privacy, dignity and liberty are overridden. Could even the term dementia elicit a stigmatised approach, which health and social care staff may or may not be aware of?

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Questions considered

• The literature review explored if these concepts impacted on care and practice and aimed to explore if this affected an individual’s ability to “live well with dementia” which is an aim of the National Dementia Strategy (DoH 2009).

• Overall, it evaluated if the diagnosis of dementia, in itself, its “tainted” by stigma and if so what are the key factors which need to be considered to improve the lived experience of PLWD.

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Rationale and context for the

literature review• The Francis Report noted “a culture of care where neglect went

unnoticed” with “an absence of human kindness, neglect”, and concurs with AS (2012) and CQC 2013) that “PLWD at risk of poor care and their voice is often unheard because of misunderstandings and misconceptions about the condition”

• Dementia was declared a national priority in 2007 which led to the development of the National Dementia Strategy and the overarching aim of “living well with dementia”

• At any time in an acute hospital over 1/3 of beds will be occupied by someone with a diagnosis of dementia

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Furthermore, the CQC (2013) reported that

individuals living with dementia are:

More likely than counterparts to go to hospital with an avoidable condition such as pressure sores, urinary infections, dehydration

Once admitted they will stay longerBe more likely to be readmittedBe much more likely to die in hospital

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Service user experience

• The NHS Confederation Report, Acute Awareness (2010) also highlighted this issue distinctly:A woman whose mother had a diagnosis of dementia was admitted following a chest infection which increased her confusion. She had become disorientated and started to bang her hand on the table. When the relative arrived to see her mother, she found a note from a nurse which read:

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“You are not well, you need to stayin hospital.

Just sit there, relax.

Don’t bang on the table”

(NHS Confederation 2010, pg 7)

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Key Findings of the literature review

• There was a consensus that dementia is one of the diagnoses that people fear the most (Pratt & Wilkinson 2001, Katsuno 2005)

• People being diagnosed with dementia feared losing friends, being devalued and were fearful that mistreatment may occur as a result of being diagnosed with dementia

• There was also a consensus that the myths and perceptions surrounding dementia are unhelpful and detrimental to the well being of that person

• Many were not “living well” with dementia

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Other key areas of significance

• A lack of voice/presence for individuals living with dementia in research areas

• A loss of sense of self and self esteem (AS 2010, Beeston 2010, Pratt & Wilkinson 2001)

• Loss of choice and control over decision making (AS 2012, Beeston 2010, Moyle et al 2011)

• Delayed diagnosis (Moyle et al 2013, Pratt & Wilkinson 2001)• Adjustment and coping (AS 2008, Pratt & Wilkinson 2001)• Physical care became the focus of care giving (Moyle et al 2013) and the

psycho social aspects are neglected• Professionals’ attitudes impacted and affected “living well”• People with dementia are able to experience wellbeing in environments

which recognise individuality and have supportive care givers (Holland et al 2013, AS 2010)

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The voice of the person living with dementia

• There was a paucity of research in this area • Historically PLWD have been studied and

observed but excluded from research initiatives, in contrast to a wide range of other illnesses and conditions

• Evidence suggests that proxy views of care givers are not representative of the view of the PLWD and that full involvement can enhance citizenship and personhood (Carpenter et al 2007)

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Service user involvement in dementia

research

• Inclusive measures can be made to ensure that the voice of the person with dementia is heard.

• Carrying out research with individuals living with dementia is not insignificant and careful planning and consideration of needs has to be undertaken because of difficulties in following conversations, particularly in focus groups with strangers.

• Any studies involving any participants in a programme of research are subject to scrutiny by the relevant Ethics Committee of that institution.

• The Mental Capacity Act (2005) has specific requirements to ensure individuals who may be incapacitated be protected from harm or exploitation.

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Unseen and unheard?

• There are concerns that stigma and discrimination for PLWD extends further for groups who are already marginalised and excluded and this can lead to a reluctance to seek help and support from services.

• Two of the studies attempted to include the voices of “seldom heard groups” (Alzheimer’s Society 2008) and “hard to reach groups” (Katz et al 2013) to increase diversity and value of their studies. Eg: First generation migrants increased risk to developing vascular dementia(Phillips and Parker 2007)

• PLWD rarely expressed dissatisfaction despite having complex needs Katz et al (2013).

• “Inverse satisfaction” Bowling (2001)

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Is it Ageism?

• Ageism has been well documented in health and social care (Audit Commission 2004, RCP 2009) which can lead to older adults been seen as “inferior”

• One in ten GPs failed to refer older people to secondary care because they had had a “good innings” (Gilchrist 1999)

• Ageism and age discrimination cannot account for stigma, marginalisation, lack of choice in decision making that younger people diagnosed with dementia consistently experience and report (AS 2008).

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Early onset and timely diagnosis

• There is growing evidence that stigma and discrimination are evident in the care and attitudes that younger people experience when they are diagnosed and living with dementia, particularly around a timely diagnosis (Beeston 2010).

• There was a consensus that early diagnosis was a positive initiative and it enabled choice and decision making for the person living with dementia, which was identified as prerequisite for “living well”.

• This was particularly apparent in some of the narrative accounts of people who were of working age, had dependent children and mortgages to consider in relation to their diagnosis and future lifestyle (Pratt and Wilkinson 2001, Alzheimer’s Society 2012).

• Dementia has been vastly under diagnosed within the UK (National Audit Office 2007) reducing stigma may change public awareness and encourage people to see their GP regarding memory problems.

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Early onset and timely diagnosis

• It was clear from the studies in the literature review that early and timely diagnosis is essential in enabling decision making and choice for individuals living with dementia.

• One persistent theme was a reluctance by GPs to diagnose a condition for which there is no cure, no hope and that they believed would be too distressing for the individual concerned (Alzheimer’s Society 2008).

• This reluctance was identified as therapeutic nihilism

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Therapeutic Nihilism

• Therapeutic nihilism stems from the belief that if there is no recognised cure or treatment for an illness it may be damaging to disclose the truth thereby destroy a person’s hope for the future.

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Therapeutic Nihilism

• As the traditional dominant medical approach in dementia care has been challenged in the past 25 years, there has been a move towards a more person-centred model.

• The work of Kitwood, Brooker, Nolan places great emphasis on a psycho social approach.

• In Mental Health Nursing, contemporary services for people of working age are primarily concerned with Recovery (Perkins and Repper 2013).

• The Recovery framework’s guiding principle is hope, with a belief that it is possible for someone to regain a meaningful life after a diagnosis of a mental health problem.

In relation to therapeutic nihilism, Adams (2010), asserts,“underlying therapeutic nihilism is the view that there can be no

recovery for people with dementia” (Adams 2010)

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Ethical and professional issues

• The moral issue regarding diagnosis disclosure emanates from basic ethical principles of autonomy and beneficence (Beauchamp and Childress 1994).

• Autonomy is concerned with respecting the rights of an adult to make decisions concerning their life.

• Concerns about catastrophic reactions including suicidal thoughts and depression are widespread according to Pinner and Bouman (2003), despite there being little evidence for this assertion.

• In contrast all the evidence in the studies reviewed suggested that early or timely diagnosis was beneficial, even though it was often initially distressing to individuals and families, because it gave them time to adjust and helped them plan for the future.

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Ethical and professional issues

• The introduction of the Mental Capacity Act (2005) has been clear in its position that health professionals must presume competence unless there is clear evidence to the contrary.

• It would therefore follow that all patients have a right to know their diagnosis, unless they specifically stated they did not wish to do so.

• The patients “right to know” campaign has gained more ground in health care in recent years but in dementia care, compared to cancer or other long term conditions, there is still evidence of paternalistic attitudes which can impact significantly on choice and decision making in the short and longer term.

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Summary of the evidence

• The impact of stigma and discrimination and its impact on living well with dementia is clearly illustrated within many of the studies.

• The studies suggest that inequalities and poor care experienced by people living with dementia is not only influenced by discriminatory attitudes towards age but are specifically related to stigma attached to the diagnosis of dementia and that dementia is “tainted” (Goffman 1963) by stigma.

• The studies involving those living with early onset dementia highlighted this issue very clearly.

• The concept of therapeutic nihilism suggests that many professional groups believe there is no hope of a meaningful life after diagnosis, a view that is clearly not shared by people living with diagnosis of dementia in environments where their humanity and value is respected.

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Outputs and Impact from the systematic literature

review• Development of a specialist Dementia module – Developing positive approaches for PLWD –

7MH500 for health and social care professionals working with PLWD• Key messages from the research embedded into the theory modules of both mental health nursing

and field shared modules on the BSc/MSc pre reg nursing programmes.• Publication Kilduff A. (2014) Dementia and stigma: a review of the literature on the reality of

living with dementia. Mental Health Nursing 34(5): 7-11.

• Accreditation of the College of Health and Social Care as being “Dementia Friendly” by the Alzheimer’s Society

• All students on the BSc/MSc pre reg Nursing programmes are Dementia Friends and many are Dementia Champions.

• The Dementia Friends Initiative is now part of the Equality and Diversity Staff programme at the University of Derby.

• Partnership working and membership of the Derbyshire Dementia Action Alliance• Partnership working with South Derbyshire Dementia Friendly Community• Presentation at a wide range of conferences/workshops to increase awareness of the key issues

from the literature findings• Media contributor on behalf of the College for Dementia issues in the press.• Partnership working and contributor to the development and validation of the Dementia MOOC –

Bridging the Dementia Divide