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End of life with dementia in a residential care setting: the need for openness

Certain conversations in healthcare, or in life generally, are difficult. Death has come to be an event I can expect again myself, personally, having had a cardiac arrest myself in 2007. From that time, I believe that anything can happen at any time. An unfortunate conclusion I drew from my time in medicine was that nasty things happened to nice people.

Receiving a formal diagnosis of dementia, as Richard Taylor, living with dementia, says, does not bring you any closer to the day when you would have died.

The change in emphasis to ‘living well with dementia’ is partly to get round the notion of preparing for death. Likewise, residential care settings can be unappealing for some, taking on the aura of a departure lounge for the journey ending ultimately in death. Dementia poses particular issues for end of life planning, and the general impression in policy that these issues have been generally under-addressed thus far.

The recently published ‘Prime Minister Dementia Vision 2020‘ even included a section on it.

end of life

We know that dementia is a progressive condition, but it is not always easy for care staff and family carers to tell when the end of life is approaching.  A lack of understanding about dementia has been identified as a barrier to providing excellent end-of-life care for people with dementia.  You can of course attempt to do something about this, as indeed the recent Government initiatives have tried through workforce training initiatives, and giving information sessions for the general public through ‘Dementia Friends’. Specifically, there is also a lack of research on the training of care staff to recognise and respond to the need for palliative care. the use of comfort. This means that people with dementia sometimes do not receive the end of life care they would have ideally wanted.

The waiting for death component as an inevitability is bound to cause stress, but it is hoped that this inevitability of death will not deter individuals living with dementia from trying to lead lives post diagnosis. Often, people who have received a diagnosis of dementia find themselves totally unsupported. The natural course of the dementias can often be rather protracted and all too unpredictable, with progressive physical and cognitive losses typically over many months and years.  The nature of disease progression makes death at home relatively rare, and death in a specialist palliative care institution or hospice particularly rare.

The number of people living and dying with dementia is increasing.  The proportion of people with dementia will increase rapidly during the coming decades, and end-of-life practices in dementia care concern a significant number of old people and care professionals worldwide. Person centred approaches to dementia care assumes that people with dementia can actively participate in decisions about their lives, and this is generally consistent with what policy is trying to aim for folllowing diagnosis: a person-centred approach.

It is a generally accepted belief that people wish to die peacefully. Nevertheless, literature on ‘dying peacefully’ is rather limited and a bit noncommittal. The concept of ‘dying peacefully’ is broad, and it is often referred to as ‘tranquillity’, which may be connected to various aspects of emotional and spiritual well-being, such as feeling close to loved ones and feeling deep inner harmony.  Providing quality end-of-life care for individuals in residential care settings with dementia is a growing concern.

The statistics are actually quite staggering. In some countries, one-third to one-half of people with dementia live in residential or nursing homes. Three-quarters (76%) of all deaths occur in hospitals in Japan, probably the highest proportion in the world. In contrast, only 4% occur in nursing homes. But this generally is not that representative. Across Europe, most people die at an older age, which makes listening to their preferences regarding care, treatment and place of care and death especially important. A shift from hospital to care home deaths has been observed in Belgium and the Netherlands from 1998 to 2007, especially for patients with dementia.  Dying is part of care home life, and an important aspect of the overall quality of care provided. Here at home, both service provision and research tend to consider care homes as unique environments for the elderly. We do not know whether individuals with young onset dementia feel comfortable being in residential care settings with much older inhabitants; it would be dangerous to make assumptions here as elsewhere in policy.

Dying is not an unexpected outcome following a move into a care home, although often not acknowledged at the time of entry.   In the UK, the generic term ‘care home’ encompasses the provision of two types of care: nursing care and/or personal care.  Care homes for older adults are an important setting for end-of-life care provision. In the UK there are an estimated 15,700 care homes providing nursing care and/or personal care to more than 400,000 older people with a range of different needs in England and Wales. In fact, the majority of deaths of people with dementia occur in institutional settings such as care homes and hospitals, where unmet needs and concerns about care quality appear most pervasive.

Residential and nursing care homes, along with other long-term care settings have increasingly become places where people spend the final stages of their lives.  Care homes are the place of abode until their death for many older people, and how older people die in this care setting raises particular challenges.  An understanding of where people die is essential to develop health policies aimed at improving end of life care. In addition, place of death can be an important indicator of the quality of end of life care. National policy is clear that people should receive good end-of-life care irrespective of the condition with which they die, yet evidence suggests that people with dementia and their families receive poor-quality care in the final stages of their lives.

The place of death has also been recommended as a quality indicator of palliative care; in the UK death in the usual place of residence (which may be a care home) is a “key performance indicator” for those providing end of life care.  However, remaining in a familiar care environment is not always possible, and end-of-life care transitions, particularly transfers from long-term care facilities to hospitals, are common in this patient group.

In health and social care, the palliative care speciality has an acknowledged expertise in the management of dying across all ages. The term ‘palliative care’ is often used to describe care for people who are approaching the end of life. The World Health Organisation (WHO) defines palliative care as:

‘…an approach that improves the quality of life of patients and their families facing the problem 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.’

For those who are living at home or in care homes, definitions of end-of-life care are often imprecise, and it is unclear whether generalist palliative care frameworks address the needs of people with dementia.  In England, despite recent initiatives to improve this population’s access to palliative care services, the experience of the older person is largely unknown. The “Gold Standards Framework in Care Homes” was a system-based organisational approach, developed in 2004, to optimise the end-of-life care provided by generalists within a care home context. It is argued that failure to recognise dementia as a terminal condition may preclude access to palliative care. Reported problems include under-diagnosis and poor treatment of pain, painful and unnecessary investigations, and inappropriate use of aggressive treatments.

There is still relatively little research on the provision of specialist palliative care support and the integration of services for people living and dying in care homes.  However, there is no single universally agreed definition of end of life care.  In some contexts it is used to describe the care given in the last few months of a person’s life or when their death is no longer unexpected, whereas in others it refers to the final few hours of life or even death itself.

According to the General Medical Council (GMC), the regulator of doctors, people are approaching the end of their life when they are likely to die within 12 months.

End of life care and dementia care are areas of growing prominence in health and social care policy, and there have been a number of government initiatives in England aimed at improving both end of life care and support for people with dementia. Professional and policy guidance on care for people with dementia nearing the end of life do indeed emphasise the importance of advance care planning, co-ordinated working between health and social care, and the adaptation of palliative care frameworks and tools for people with long term conditions. Reviews of evidence to date have drawn heavily on evidence from settings where there is access to medical and specialist palliative care services for this population. Generalist palliative care frameworks may increase awareness of the issues for people with dementia.

Enabling people to make genuine choices about the care they receive towards the end of life is a well recognised value in palliative care. Despite some encouraging trends from The Netherlands and the U.S. regarding improved symptom management in dementia, improvement of end-of-life care for dementia can be slow to advance. Thee provision of high-quality end-of-life care for nursing home residents with dementia is essential. However, the literature reports numerous shortcomings in the end-of-life care for dementia, psychotropic drugs and poor decision-making in the last month of life of nursing home residents with dementia.

As the dementia time course nears its end, a number of treatment decisions may be considered including the use of resuscitation, hospitalisation, artificial nutrition and hydration, antibiotics, diagnostic tests, and analgesics.  The universal goal of care for advanced dementia is to maximise comfort and treatments and interventions that will address this must be a priority. Determining pain and discomfort in persons with dementia generally presents a challenge, yet every effort should be made to determine the possible cause of distress (e.g., position, incontinence, pain).  Experts generally agree that in end-of-life care, the emphasis should be on comfort, pain and other symptom control, continuity of care, and a familiar living environment with familiar people. Pain and shortness of breath are the most prevalent symptoms at some point in the process of dementia, with a peak when death approaches. Symptom control is an important factor in maintaining or improving quality of life in end-of-life care. So far, treatment has been mostly empirical or based on general palliative care guidelines, which are not tailored to dementia.

In dementia, hospitalisation of people nearing the end of their lives can have a profound detrimental impact, with patients experiencing problems such as pressure sores, worsening of behavioural problems, and increased confusion. Reducing the use of hospital-based care in advanced dementia has also potential economic benefits. Transferred residents are indeed at worse health; higher risk of functional decline and mortality and many are at higher risk of delirium, anorexia, incontinence and falls. High rates of burdensome transitions are also related to other indicators of poor end-of-life care, such as tube feeding which may result in aspiration pneumonia, intensive care unit admissions, decubitus ulcer and late hospice enrolment. Burdensome hospital transitions of nursing home residents with dementia and stays in intensive care units are not unusual.

Good quality palliative care in care homes, rather, is reflected by a number of markers. These include a plan of action for end-of-life care, the establishment of mechanisms to discuss and record the preferences of residents approaching end of life, ongoing review of a resident’s need for end-of-life care, and access to staff training. Investment in training and facilitation for care home staff in end of life care has demonstrated the potential and value of structured approaches that encourage advance care planning, reduce unplanned admissions to hospital and increase staff confidence in their ability to provide end of life care.  The knowledge, experience and perspectives of care home managers and staff and older people residing in care homes and their family carers has yet to be fully integrated into the initiatives.

There are barriers to appropriate use of palliative care for persons with advanced dementia including nursing home residents. Too often, death is looked upon as a medical failure instead of as a part of life. Family members may not perceive dementia as a terminal illness, perhaps due to its protracted and yet unpredictable course. There is a further difficulty in recognising “possible dying” and identified triggers that can stimulate end-of-life care discussions, such as health status decline of older adults.  Lack of knowledge regarding the person with dementia’s wishes is also likely. However, family carers tend to wish to express strong personal needs during this period: they appear to want frequent contact with staff, they seek also empathy, reassurance, understanding, guidance and communication. Carers particularly feel validated when values and beliefs were shared by professionals and fear, anger and guilt when they were not.

As people with dementia gradually lose their ability to make informed decision themselves, family carers will play a more prominent role in making decisions about medical treatment and care. To enable the provision of appropriate care for people with dementia who are incapable of decision-making themselves, family carers should be aware of the medical status of their relative. Good communication with staff is highly valued by family carers, but, overall, staff and family members may find it difficult to openly discuss death and dying, and staff may not feel confident answering specific questions about end-of-life care. Making treatment decisions on behalf of another person inevitably places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Poor communication about nursing homes is a barrier to making difficult choices about care for their loved ones with advanced dementia, including resuscitation, hospital transfer, feeding options, and treatment of infection.

People with dementia may be willing and able to discuss preferences even when they are no longer considered to have the capacity to make advance decisions in their legal form. Older people may wish to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this is especially relevant in dementia, where patients experience an extended period of mental incapacity but may retain physical health. More recently the broader concept of advance care planning (ACP), a multistage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care has been introduced.  ACP is a way to improve the quality of end-of-life care and to provide person-centred care by focusing on individual preferences. ACP is especially important for people with dementia, as this disease is characterised by the gradual loss of cognitive abilities. Therefore, ACP discussions with people with dementia should start when they still have sufficient communicative and cognitive abilities to express personal preferences.  Where wishes are written, relatives report lower levels of emotional distress at the end of life.

Advance care planning aims to discuss and prepare care choices for the stage in life when people no longer have the capacity to make decisions. When a person moves into a care home, there should be opportunities to discuss advance care plans sensitively at a carefully chosen time or when the moment arises. However, it is also important to respect the wishes of people who do not want to specify in advance what end of life care they wish to receive.  In summary, advance care plans, or similar expressions of views, are important ways in which people with dementia can express their wishes about end of life care. Currently it is arguable that not enough is known about how to implement these wishes effectively, especially where there is disagreement between a person’s advance care wishes and the views of family members or professionals.

To date, research has largely focused on describing the experience of patients with advanced dementia and the care they receive. This work has delineated abundant opportunities for improvement. Addressing those opportunities must be the overarching objective for advanced dementia research in the coming decade.

So, end of life care for people living with dementia is potentially complex, but does demand our attention. Whether you’re a politician, a person living with dementia, or a caregiver, or someone completely different, not talking about the complexities won’t make the issues go away.

 

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Spirituality and sexuality for living better with dementia in residential settings

Sexuality and spirituality are important topics for people living with dementia in residential settings. This article is not about diversity in diagnosis and service provision, which I cover elsewhere. And there are many aspects of these topics, but this short piece only “scratches the surface”.

I should like to consider sexuality first.

Many professionals working in residential settings report experiencing difficulties, distress and confusion regarding sexual display between patients transferred to such places. Similar uneasiness is also expressed by family members and residents themselves. Sexual behaviours and desires of adults do not cease upon nursing home admission. For example, Hubbard, Tester, and Downs (2003) reported that institutional care residents’ often engage in intimate touch, kissing, sexual talk, flirting, and teasing. There is now a general consensus that sexuality is an intrinsic part of human personal identity. Indeed human sexuality is influenced by multiple factors including culture, ethnicity, religion, education, family and peer group, personal experience and the legal system. Our current law is clear: sexual activity with someone unable to consent is a sexual offence.

For most people living in Western societies, the right to be able to make decisions about one’s life is taken for granted. These decisions include whether or not to engage in sexual behaviour whenever and with whomever one chooses, providing of course it is mutually consensual and within the boundaries of the law. In particular, older people living on their own or with a partner generally continue to enjoy these rights and freedoms, even if they are in the early stages of dementia.

Sexuality is a broad multi-dimensional construct which encompasses relationships, romance, intimacy (ranging from simple touching and hugging, to sexually explicit contact), gender, grooming, dress and styling. However, when an older person moves into a residential aged care facility (RACF), circumstances often change.Ill-health and mobility can affect on the desire and capacity for physical intimacy, but a number of diverse factors in RACF can constrain the ability of persons to express their sexuality and sexual needs, including institutional policies, privacy, and attitudes of the staff. The existent literature strongly indicates that aged care facilities do not tend to be environments that are conducive to, or supportive of, the freedom of sexual expression.

Being able to express our sexuality is known to be important to health, well-being, quality of life and furthermore, human rights. The desire or need to express one’s sexuality does not tend to ‘extinguish’ with age; the general consensus of the studies of older people and sexuality is that there is no known age limit to sexual activity. There might conceivably be a trend of diminishing sexual behaviour with age. For many older people including those living in RACF, sexuality continues to be important. Sex between elderly people has, rather, traditionally been sometimes perceived either not to exist, or to be a topic of humour, or to be morally unseemly. Certainly, therefore, it cannot be assumed that older adults are not sexually active. It further appears that sexual and other intimate contact is healthy amongst older people. The literature overall appears to correlate sexual activity in this population with an enhanced feeling of self-worth, longer life expectancies, better cognitive functioning, and enhanced independence. The absence of such relationships, by comparison, she correlates to loneliness, depression, and even possibly a higher usage of medical and care services. Specifically, all health care team members, including occupational therapists, need to be more sensitive to the sexual desires and needs of older adults.

Abnormal sexual behaviour in the long term care setting includes unwanted sexual advances such as climbing into bed with other residents in a nursing home or actual attempts of intercourse and aberrant sexual behaviour such as sexual aggression. “Inappropriate sexual behaviour” (ISB) has been identified as a significant corollary of the dementias. An extensive review of ISB revealed a multitude of definitions, including ‘sexual advances’, ‘hypersexuality’, and ‘inappropriate commentary’. Its precise aetiology has not been defined; rather, various neurobiological, psychological and environmental explanations have been offered. A difference in function of the prefrontal cortex part of the brain has been implicated, but so has a number of psycho-social factors. However, the legitimate and recognised need for nursing home residents, even those with advanced dementia, to sexually express themselves may make preventing and managing sexual aggression in nursing homes more challenging. It will be a good idea to develop “on-the-job training programmes” for sexual education of residents with dementia in institutions. Regular seminars on sexual care for the residents with dementia might be beneficial for managing sexual issues among residents and to decrease caregivers’ burden.

Spirituality is another interesting area.

It is important to distinguish between spirituality and religion. All people are spiritual regardless of their religious beliefs, although spirituality may be expressed through religious practices and/or a belief in God or a higher being. Religion involves specific practices and beliefs that may be associated with an organised group. Spirituality is a person’s search for or expression of his or her connection to a greater and meaningful context. Being spiritual is part of being human because it forms the root of one’s identity and gives life meaning. The impact of spirituality as a component of psychological wellbeing is becoming more recognised by both health professionals and national organisations. Spirituality is a natural part of human existence and can mean different things to different people. Clinicians are increasingly attempting to provide whole person care, which includes providing spiritual care particularly when administering care at the end of life. “Holistic nursing” addresses the physical, mental, social and spiritual needs in people’s lives. Spirituality may contain dimensions of spiritual well-being (e.g. peace), spiritual cognitive behavioural context (spiritual beliefs, spiritual activities and spiritual relationships) and spiritual coping. Spiritual caregiving may contribute to wellbeing at the end of life, as shown in palliative populations of mostly cancer patients.

In the United States, the United Kingdom, and the Netherlands, about 25% of all deaths occur in the nursing home. In dementia and at the end of life, spiritual caregiving poses particular challenges. For example, it may be difficult to predict the end of life, and to communicate verbally due to cognitive impairment, perhaps with superimposed acute illness. Spiritual caregiving in dementia may be a neglected area, with little research available. For example, in a UK hospital, religious beliefs of dementia patients are less frequently documented than in patients without dementia. Further, recent reviews indicate that there is some evidence of beneficial effects, also in dementia, of spiritual interventions and spirituality and religiousness on, for example, coping, wellbeing, and behaviour. In studies on spiritual care in long term care settings, spiritual support and care are associated with better overall care at the end of life for long term care residents, and that the best target for interventions to improve this type of care is the interaction between residents and facility staff.

Reference

Hubbard, G., Tester, S., & Downs, M. G. (2003). Meaningful social interactions between older people in institutional care settings. Ageing and Society, 23, 99-114.

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That blue black gold white dress and dementia friendly communities

changing

Is this dress black and blue or gold and white?

The background colour of daylight varies during the time of day.

That colour axis varies from the pinkish red of dawn, up through the blue-white of noontime, and then back down to reddish twilight.

People who see white and gold may be looking at the dress in a blue-lit room or near a window with a blue sky. It also depends on our own individual sensitivity to the bluish tinting in the photo. The brains of people who see white and gold are interpreting the photo as more shadowy. The brain compensates for the darker blue tinting and interprets the blue part as white and the black part as gold.

So we all do see the dress differently.

 

Dress

This phenomenon is known as “colour constancy”.

Colour constancy is an example of subjective constancy and a feature of the human colour perception system which ensures that the perceived colour of objects remains relatively constant under varying illumination conditions.

A green apple for instance looks green to us at midday, when the main illumination is white sunlight, and also at sunset, when the main illumination is red. We don’t want the colour of objects appearing to change as the day progresses?

The physiological basis for colour constancy is thought to involve specialised neurones in the primary visual cortex that compute local ratios of cone activity.

Colour constancy works only if the incident illumination contains a range of wavelengths.

The different cone cells of the eye register different but overlapping ranges of wavelengths of the light reflected by every object in the scene. From this information, the visual system attempts to determine the approximate composition of the illuminating light. This illumination is then discounted in order to obtain the object’s “true colour” or reflectance: the wavelengths of light the object reflects. This reflectance then largely determines the perceived colour.

These cone cells are the colour-sensitive cells of the retina (comparable to the “film” in a camera). The non-colour sensitive cells are called rods. This is what a cone looks like under a microscope.

cone cells

The same phenomenon underlies the “Mondrian panel” – where the colour of a square depends on the colour of the squares around it. Pieter Cornelis “Piet” Mondriaan (March 7, 1872 – February 1, 1944), was a Dutch painter. He was an important contributor to the De Stijl art movement and group, which was founded by Theo van Doesburg. He evolved a non-representational form which he termed neoplasticism. This consisted of white ground, upon which was painted a grid of vertical and horizontal black lines and the three primary colours.

Mondrian panel

And central processing of colour is not thought to be affected early on in the dementia of the Alzheimer type, as the memory part of the brain (hippocampus) is in a different part of the brain involved in processing colour (the occipital part of the brain). That’s why we do desperately need some evidence-based neuroscience looking at colour in so called “dementia friendly communities”, otherwise the field will be riddled with speculation, anecdote and rumour.

Posterior cortical atrophy (PCA) is different. In “Dementia Friends”, we are told that dementia is not just about losing your memory – indeed in early PCA the common presenting problem can be that of visual perception rather than memory. It’s not uncommon for people with this form of dementia to go round the houses seeing opticians rather the memory clinic/cognitive disorders clinic.

As stated here,

“The symptoms of PCA can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with PCA experience anxiety, possibly because they know something is wrong. In the early stages of PCA, most people do not have markedly reduced memory, but memory can be affected in later stages.”

However, there are specific dementia syndromes which can conceivably affect that part of the brain. Chan, Crutch and Warrington (2001) reported an intriguing 64 year old woman with posterior cortical atrophy. Her presenting symptom was of seeing objects as abnormally coloured after prior exposure to a coloured stimulus. Formal testing disclosed that the patient experienced colour after-images of abnormal latency, duration, and amplitude.

Indeed the description of the methods in the paper makes reference to Mondrian panels.

A general theme is that living better with dementia is the result of an exquisite interaction between the facets of a person (personhood) and the wider environment at large.

It would be low hanging fruit to see if a population of people living well with posterior cortical atrophy see the dress differently to people in the general population. We know we tend to see that dress differently, but are the ratios of the black/blue – gold/white different in people living well with posterior cortical atrophy?

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Neglect and abuse in care mean that certain people are not living well with dementia

Elder abuse, the mistreatment of older people, affects over 100,000 older adults each year in the United Kingdom. The global prevalence of elder abuse is unknown as underreporting is estimated to be as high as 80%. Approximately half of abuse violations are ‘serious enough to cause actual harm to the residents or to place them in immediate jeopardy of death or serious injury’.

Protecting the rights of residents of long-term care services has become a high profile policy goal within the UK and internationally, thereby confirming elder abuse’s current status as a social problem. Common to many definitions, this has an individualistic focus, in which abuse is seen as primarily, if not exclusively, an interpersonal phenomenon. This definition is also typical in that it excludes crimes committed by strangers and structural issues, such as poverty and the possible impact of ageism.

Ageism appears to be a widespread phenomenon in many domains of life and is known to be prevalent in health care. Ageism relates to the systematic discrimination of older persons, viewing them as senile, a burden, useless, and invisible. Ageism can be expressed on three levels: the individual (micro) level, the institutional level, and the societal (macro) level. Not all people who are old have dementia, and not all people living with dementia are old; but there is concern about the group of older citizens living with certain severity of dementia. Some people with dementia may be at particular risk of elder abuse. Several theories have been proposed to explain the onset of elder abuse. Social learning of abusive behaviours, caregiver stress, social isolation of the victim, dependency between the victim and the abuser, and psychopathology of the abuser are commonly accepted theories.

Elder abuse has been defined by the World Health Organization as a single or repeated act, or lack of an appropriate action, occurring within any relationship where there is an expectation of trust and which causes harm or distress to an older person. According to Max Weber, action is human behaviour (external acts, internal acts, omissions) to which the acting individual attaches subjective meaning. As a regulative principle of the concept of a person, a principle of respect for a person is one that requires respecting other persons’ human rights, promoting dignity, and avoiding their exploitation and abuse. The maltreatment of such residents in long-term care facilities is commonly unrecognised. Maltreatment includes various behaviours, such as physical, psychological, and sexual abuse, financial exploitation, and neglect. These behaviours may cause permanent disability and even death. Elder abuse encompasses the concepts of abuse and neglect.

Elder abuse may be domestic, taking place in the home of the abused or in the home of a caregiver, or it may be institutional, taking place in a residential facility for the elderly (eg, a nursing home). Elder abuse may be intentional (active) or unintentional (passive). Nurses are among the first professional workers to encounter the older persons who arrive at the long-term care facility. They are therefore positioned on the front line to detect abuse and neglect and are also in a position to prevent it.

Neglect implies withholding of expected levels of comfort, e.g., withholding food or medications.

Abuse may take several forms. Physical abuse encompasses a wide range of abuse, including striking, pushing, shoving, choking, burning of skin and other forms of physical injury.

Psychological or emotional abuse may be subtle but includes withholding of funds, food, medications, isolation, belittling or ignoring of elders, and other forms of non-physical abuse. Financial abuse is fairly frequent, inasmuch as family members and others may restrict access of elder persons to much needed funding that they may be entitled to receive. This may include confiscation of pensions, annuity funds, social security checks or personal savings.

Not all elder abuse relates to care and treatment: there are high risks of financial abuse among people with dementia both living at home and in other settings. There are many sources of data about poor care, abuse and neglect of people with dementia in care home and hospital settings but these are collected for different purposes and hard to link. The “caregiver stress theory” of abuse is the most frequently cited argument supporting a relationship between dementia and elder abuse. Any form of abuse, harm or neglect is unacceptable and should not be tolerated by the provider of a service, its staff, the regulators, or by members of the public or allied professionals who may also become aware of such incidents. Awareness of elder mistreatment in long-term care settings such as care homes and hospitals in the UK has increased greatly over the past 20 years.
Long-term care (LTC) can be defined based on the characteristics of the person receiving care. The most useful image of an older person who receives or needs LTC is of an older person who is frail, disabled, or has multiple chronic conditions.

Various stakeholders have proposed a range of measures for the prevention of abuse and the protection of residents: a stricter legislative framework for private residential facilities, including mandatory accreditation, varied systems for evaluating the quality of services, and the role of ombudsperson. Notwithstanding, CQC’s underpinning priorities in regulation are currently to:

• focus on quality and act swiftly to eliminate poor quality care, and
• to make sure that care is centred on people’s needs and protects their rights.

Care that fails to meet the expected national standards of quality and safety is supposed to be intolerable under implementation of existent law and regulation. Some form of surveillance is critical to ensure people are receiving safe, high-quality and compassionate care. We need enough staff, properly trained and supported who really care to ensure people get the services they have every right to expect. The term ‘safeguarding’ can be defined so as to describe a range of activities that organisations should have in place to protect people (both children and adults, unless stated otherwise) whose circumstances make them particularly vulnerable to abuse, neglect or harm.

There has been recent scrutiny of surveillance techniques in preventing or acting upon neglect or abuse in care homes. Adult safeguarding is the process of protecting adults with care and support needs from abuse or neglect. It is an important part of what many public services do, but the key responsibility is with local authorities in partnership with the police and the NHS. The Care Act 2014 puts adult safeguarding on a legal footing and from April 2015 each local authority must make enquiries, or ensure others do so, if it believes an adult is subject to, or at risk of, abuse or neglect. An enquiry should establish whether any action needs to be taken to stop or prevent abuse or neglect, and if so, by whom.

It was announced recently in the lifetime of this government that a new offence of ‘wilful neglect or mistreatment’ is to be created for NHS hospital staff whose conduct amounts to the deliberate or reckless mistreatment of patients. This offence will be modeled on an existing offence under the Mental Capacity Act which punishes the wilful neglect or ill-treatment of patients lacking capacity. Currently, a medical worker convicted of this offence faces a maximum sentence of five years imprisonment, or an unlimited fine. The sanctions for the proposed new offence are likely to be of a similar severity.

The creation of the offence comes in the wake of the inquiry into the widespread negligence that occurred at Mid Staffs. Intended principally to deter healthcare workers from mistreating patients, the new offence has been proposed following review of patient safety. The leader of the review, Professor Don Berwick, emphasised that patient safety must become the top priority, consistent with the statutory purpose of the clinical regulators, and that the measure was needed to target the worst cases of an attitude that led to ‘wilful or reckless neglect or mistreatment’. The measure in the construct of our and EU law has to necessary and proportionate in implementation. Whilst most would agree that patient safety should be a priority, there has been concern that the new criminal sanction could create a ‘climate of fear’ amongst healthcare workers and that individual workers will be penalised for mistakes pursuant to inadequate staffing or simple human error, rather than blameworthy acts of intentional malice.

An understudied issue is abuse among older adults living in nursing homes, often referred to as resident-to-resident aggression (RRA). Although the term ‘‘elder mistreatment’’ in the context of nursing home care invariably evokes images of resident abuse by staff, resident-to-resident aggression (RRA) may be a much more-prevalent and problematic phenomenon. Cognitive impairment afflicts a huge proportion of nursing home residents in many jurisdictions, often leading to behavioural disturbances including agitation and overt aggression. Behavioural disturbances are a well-known risk factor for nursing home placement. It is likely that collocating nursing home residents with behavioural disturbances increases the potential for RRA.

Finally, elder abuse and neglect continues to be a growing and often unrecognised problem in many jurisdictions including the UK. At their best, assisted living facilities hold the promise to maximise the dignity, privacy, and independence of their residents. The opportunity for residents to “age in place” with the availability of increased services allows for a highly variable range of residents to coexist in assisted living. Specifically, the presence of cognitive impairment in conjunction with minimal regulations and oversight, private rooms, low staff ratios, minimal staff training, and high staff turnover may conspire to increase risk.

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I've made 77 Dementia Friends. Another session today.

My attempts at making ‘Dementia Friends’ are very modest.

But my friend Chris Roberts (@mason4233) keeps on emphasising its quality not quantity.

I’ve made 77 Dementia Friends thus far.

Chris would say that “that’s 77 more people who know more about dementia than they did before.”

My “dashboard” is very low key, but I am just one very small cog in a giant ‘social movement’.

77S

Today I’m giving another information session at BPP Law School. All are welcome, but you do need to sign up in advance if you wish to attend.

There are also plans to achieve three million more “dementia friends” in the latest announcement from the Prime Minister about dementia.

Some of my slides for today’s information sessions (excluding the activities) are shown below.

Dementia Friends For publication.ppt

Dementia Friends For publication.ppt

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Parity of esteem must ensure wellbeing in dementia research is not seen as inferior

The “parity of esteem” refers typically to mental health not being seen as inferior to physical health. But there is now a political drive now which has biased the research world in dementia. It is more prestigious, and more lucrative, to study lab-based research into neuroscience, including neurochemistry, neuropathology, or neuropsychopharmacology, rather than more social care practitioner based research, such as wellbeing in everyday life or in care homes. Often social care practitioners, working to the limit, do not have adequate time or resources from the system at large to devote themselves to high quality research in this desperately important area of research.

Quality statement 4 of NICE Quality Standard for “Supporting people to live well with dementia” reads as follows:

“People with dementia are enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice.”

NICE further gives the rationale for this as follows:

“It is important that people with dementia can take part in leisure activities during their day that are meaningful to them. People have different interests and preferences about how they wish to spend their time. People with dementia are no exception but increasingly need the support of others to participate. Understanding this and how to enable people with dementia to take part in leisure activities can help maintain and improve quality of life.”

People with dementia living in residential care homes may spend the majority of their time engaged in no activity, apart from the usual personal care activities. But such individuals often have complex mental health problems, disabilities and social needs. Activities do not need to be structured or complicated. The lack of meaningful activities has been associated with a decrease in residents’ functional status, increased behavioural problems, social isolation and poor quality of life. Although attempts have been made to identify what sort of activities contribute to the well-being of people, little is known about their views regarding what constitutes meaningful activity. While there is increasing evidence of the positive benefit of intensive personalised or more one-on-one activities for residents with dementia), many residents have very limited social interaction with staff or other people. Many older people with dementia live in care homes, but they often lack appropriate daytime activities, with many homes attempting to meet their needs by providing group activities run by unskilled staff on zero hour contracts (or sometimes on less than the minimum national minimum wage.)

But people living in residential care can become enabled, with the involvement of their carers, to take part in leisure activities during their day based on individual interest and choice. This is more evident in moderate to severe stages of dementia. Providing more comprehensive training for staff working in care home environments is a high national priority.

Activity has therefore been recommended for people with dementia as a means of retaining human abilities and function,by maintaining their connection with the environment and encouraging social interaction. It has, unsurprisingly, been recommended that, in the middle to late stages of the disease, the activities should focus on fine- and gross-motor and sensory activities. Consistent with this recommendation, there are currently two main approaches with promising results in people with moderate to severe dementia: multi sensory stimulation and motor stimulation.

It is recommended that nursing staff encourage should activities that stimulate people with dementia, even when there is limited time or room for social contact. An example of this situation are treatments with recreational activities, such as games and art therapies (eg, music, dance, art), that are frequently offered to people with dementia in nursing homes or day-care centres. Needs for social interaction and physical movement, for example, might be addressed by carefully selected group activities and exercise. However, a gap exists between research on person-centered dementia care and its incorporation into clinical practices. The gap persists due to negative perceptions of dementia held by practitioners , the lack of investment in education for practitioners delivering dementia care, and appropriate knowledge translation methods for health care practitioners.

By encouraging residents to do what they can for themselves during normal daily activities, staff can facilitate a sense of familiarity, competence and security. In theory, this approach purports that the ordinary and familiar things people do every day promotes and supports a sense of well-being. In addition, teaching staff to see the person and not the disease contributed to a change in the culture of care within the units; this is of course a key message of the national “Dementia Friends” campaign currently underway. There is a need, overall, to develop new alternative treatment methods in the care of patients with dementia.

The high prevalence of dementia within care homes means that any interventions provided within this setting are likely to reach a significant number of people with dementia and hence be more cost effective. Physical inactivity and disability in elderly institutionalised patients may negatively affect their ability to perform activities of daily living and worsen their health related quality of life status. An intervention suited to nursing home residents with dementia that would increase positive mood would improve quality of life for the resident. Traditional interventions to improve mood such as cognitive and interpersonal therapies require communication abilities that may be compromised in individuals with dementia. Negative affect, which is frequently exemplified as anxiety, sadness, and anger, is common in community dwelling persons with dementia and is often associated with behaviours that are difficult for family caregivers to manage. Positive mood is an integral component of quality of life for nursing home residents with dementia.

Music and dance are often incorporated into activities for people with dementia who are in long-termcare. This is termed ‘dance therapy’. The emotional response to social dancing and walks in persons with dementia was studied to better understand the feasibility, popularity, and meaning of these activities from the perspective of the patient. Dance research has highlighted improvements in physical health and shown increases in social activity among healthy older adults. A longitudinal study has even also reported that dancing reduced the risk of developing dementia.Drama is particularly effective in helping clinicians attend to the human dimensions of care, achieve a better understanding of patients’ experiences, and appreciate the power imbalance in the patient-clinician relationship. Drama is both a method and a subject, seen from an holistic perspective, and integrates thoughts, feelings and actions. It includes, for example, group activity in fictional role-play, where the participants can learn to explore issues, events and relationships. Drama has been used as a method within nursing education and is also suggested to be used in clinical settings.

Exercise has the potential to meet these requirements. Evidence currently suggests that exercise and some cognition-focused intervention approaches can be used to elicit functional improvements in older people and, to some degree, those diagnosed with dementia. Indeed preliminary results indicate that it is feasible to conduct a combined aerobic and strength training program in institutionalised patients with dementia. For example, a “chair-based exercise program” is associated with reduced symptoms of negative affect in residents of a secured dementia unit in a long-term care facility. A high-intensity functional weight-bearing exercise program seems to reduce decline in activities of daily living related to indoor mobility for older people living in residential care facilities. At the other end of the spectrum, “Tai Chi” is a mind-body exercise combining relaxed physical movement and meditation, and has been suggested to have many health benefits.

The “Well-being and Health for People with Dementia” research study (“WHELD”) combines the most effective elements of existing approaches to develop a comprehensive but practical staff training intervention. This optimised intervention is based on a factorial study and qualitative evaluation, to combine: training on person-centred care, promoting person-centred activities and interactions, and providing care home staff and general practitioners with updated knowledge regarding the optimal use of psychotropic medications for persons with dementia in care homes. red care training intervention in care homes worldwide.

“Dementia Adventure” connects people living with dementia with nature and a sense of adventure. Dementia Adventure is a multi-award winning social enterprise. We are based in Essex but work nationally and have an international following. They provide training, research, and consultancy services – all with nature in mind. Income from these activities, donations and grant funding mean we can provide Dementia Adventures from park walks to sailing holidays.

Alive! is a charity dedicated to improving the quality of life for older people in care by enabling their participation in meaningful activity. They run hour-long activity sessions for older people in over 350 care homes and day centres across the South and South West of England. They also run one-to-one sessions for individuals who are not able to join in with a group Their sessions are designed to be effective for people living with Alzheimer’s disease and other forms of dementia, physical disabilities, neurodegenerative illnesses such as Parkinson’s disease, learning difficulties and mental disorders. In one event, “Our Paint Pals” created a piece of art under the theme ‘It’s our world’ and showed how being creative can bring the generations together.

Much more research needs to take place in care homes to see what constitutes an enriched environment, how and why. But these are early days. Such research must not be seen as ‘inferior’ to the research which is lab based – a new “parity of esteem” has now emerged. In summary, “parity of esteem” must ensure wellbeing in dementia research is not seen as inferior.

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From chains to cobras: how fixation is disturbing English dementia policy

Neurobonkers writes:

“Have you ever found yourself taking an exam, working on a tight deadline, or solving an important time critical problem and becoming stuck; unable to progress because you’re brain won’t let you move on until you remember a piece of information that is on the tip of your tongue?”

Martin Bromiley has been instrumental in describing this “fixation problem“.

Bromiley’s case, of failed anaesthesia in a critical situation, was described in a 2010 paper in the journal Anaesthesia which looks at the fixation problem with an experimental analogy. It has repercussions for patient safety in the contemporary NHS.

Consider the following “cheap necklace problem”. Your aim is to make a necklace that costs no more than 15 cents using the four chains below. It costs two cents to open a link and three cents to close it again. If you are struggling to solve this problem then you’re not alone – 97% fail to solve the cheap necklace problem.

CHAINS

To solve the cheap necklace problem we must break the links in one of the chains, costing us six cents and use these three links to join the remaining chains.

It turns out that over 90% of adults can’t solve this problem successfully – as they become fixated on the impossibility of it.

In dementia policy, the gaming of the ‘ambition’ for diagnostic rates has become much more significant that the value of the diagnostic rates themselves. Calling them ‘ambitions’ rather than ‘targets’ is a vacuous exercise of meaningless circumstance.

Through a change in algorithm, a GP practice can have wildly different rates of diagnosing dementias from one year to the next. And policy should rightly approach this issue with fear – when human mortality standardised ratios were gamed it led to real problems.

In the Australian jurisdiction, certain institutions were alleged to respond to an unfavourable HSMR by “gaming” administrative data and risk-adjustment models or implementing inappropriate changes to care.

And it became relevant to Mid Staffs too.

“A symptom of this cycle is the gaming of data and goals; if the system is unable to be better, because its people lack the capacity or capability to improve, the aim becomes above all to look better, even when truth is the casualty.”

The national pressure to make diagnostic rates appear better plays scant disregard to the actual epidemiological data from the MRC CFAS work to show that the prevalence of dementias in England has in fact been falling.

Also, the appearance of a greater number of dementias being diagnosed in primary care bears little or no relation to the ability of GPs to diagnose certain young onset dementias, for example the behavioural variant of frontotemporal dementia where insidious personality change is the presenting symptom not problems in short-term memory.

If you’re not worried about this situation, you should be.

Dr Martin Brunet in an excellent talk yesterday at the King’s Fund in a satellite session on diagnostic rates brought the audience’s attention to the “cobra effect”, which stems from an anecdote set at the time of British rule of colonial India.

The then British government was concerned about the number of venomous cobra snakes in Delhi. It therefore offered a lucrative bounty for every dead cobra. Initially this was a successful strategy as large numbers of snakes were killed for the reward.

Eventually, however, “enterprising” persons, ‘doing things differently’, began to breed cobras for the income. When the government became aware of this, the reward program was scrapped, causing the cobra breeders to set the now-worthless snakes free. As a result, the wild cobra population further increased. The apparent solution for the problem had no effect on the underlying problem; arguably it in fact made the situation ultimately far worse.

The rather-sensationally labelled “cash for diagnoses scandal”, with GP practices being paid handsome incentives for dementia-related work, was viewed by many to be a low-point in QOF overplaying their hand in England: “an ethical travesty“.

In my discussion at this satellite session for the King’s Fund, I argued that this fixation problem in English policy is a significant issue. It is setting patients with dementia up for a fall; in gaming the diagnostic rates, perhaps as a result of political pressure from the current Government prevents one from moving onto the other, at least as important, issue of post-diagnostic support.

Later in the panel discussion, Beth Britton, leading campaigner in dementia issues, called it a “black hole” of post-diagnostic support currently.

There was a strong consensus from the audience members of our Q+A session today that it was intolerable that social care was on its knees, with social  care poorly funded, care home standards for people with dementia often quite inadequate. Even though this is a historic problem, it appears not to be fixed by the current focus on ‘dementia friendly communities’ or diagnostic rates. But it is a pressing issue, and one of massive societal significance.

It is also, significantly, an issue of resource allocation. The ‘zero sum gain’ of more money being put into practices which can successfully game targets at the expense of money being put into an adequate social care is a very real one, but these funding inequities will take longer than one term of government to solve.

Possible approaches for ‘beefing up’ post diagnostic support or care might include dementia advisers, clinical nursing specialists, an enhanced social care practitioner workforce, or care coordination.

A redistribution of allocations must take place, and integrated, whole person care, is unsurprisingly therefore a top priority now, even though everyone has been talking about it for ages.

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The big day has arrived. Bring it on! #kfdementia

Today is the big day.

It’s our day at the King’s Fund, “Leading change in dementia diagnosis and support”.

The programme is here. If you feel that something is reported which is complete garbage, make sure you get a chance to give feedback using the hashtag #kfdementia.

I had dinner last night with Chris Roberts, Jayne Goodrick and Tommy Whitelaw in a pub in Euston. It’s well known I don’t drink alcohol any more, but I had a fantastic time!

We thought Tommy’s talk at King George’s Hospital Ilford started at 6.30 pm. We got there in good time at 5.59 pm.

In fact it started at 6 pm!

BHRUT tweet

Tweet

Chris gave the ‘warm up’ talk – which was a talk I hadn’t heard before. As ever, I was intensely proud of Chris, and what he contributes to the community.

Chris

I have pledged to go through the thousands of letters with Tommy and bring them the key themes in a book. When people wrote their letters, they had no one to turn to. They would have been ‘processed’ by Government in the usual way.

This would not done justice to them. They’re not ‘complaint’ letters, but they contain information and experiences which are gold-dust. It’s likely that these wider messages will extrapolate to the care system across a number of jurisdictions. It’s likely an overall theme will emerge that people are not actually alone in their experiences, and just one small thing might have made a difference.

I told Tommy at the end of the evening that I had intended to make a polite comment at the end of his talk. But actually I actually wanted to comment on how outstanding it was. We all had joked about how it had ended up being mission impossible for me getting there taking a bus ride (I haven’t taken a bus for ten years), and climbing two flights of stairs. But, like L’Oreal, Tommy was “worth it”.

Like the NHS Change Day in England, it was absolutely great to see staff and other people involved in the NHS become truly feeling pride in what they want to see the NHS doing – which is of course great for me to see the NHS in a refreshing light.

Thanks especially to Dr Hilary Marmot, who is a person of significant sincerity, depth in knowledge and gravitas, in real life, with impeccable manners and kindness; Hilary had expressed to me in private how she had made a number of timetable “reconfigurations” to be there.

The talk has “mellowed me” out today. Instead of going to the King’s Fund in full wonk mode, expecting to spit policy bullets at people, I’ve decided to go there unscripted after all, listen and learn, and reflect on it all for my panel discussion this evening. I am looking forward to meeting many further friends and colleagues today, too many to name, but I will be especially looking out for Beth Britton, Tony Jameson Allen and Gary Rycroft.

And why not Chris and Jayne? Am seeing them in Oxford St before we begin!

A special thank you to Matthew Hopkins (@M_J_Hopkins) and his team for looking after us so well as his Trust yesterday. The pride in what you do really showed.

KGH

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If the drugs don't always work, why don't we consider more seriously cognitive stimulation therapy?

dementia CST

The transfer of an individual living with dementia into a residential setting, at worst, can be associated with an sensorily-unstimulating environment, as well as reduced sensorimotor and cognitive stimulation, social interactions, and physical activity.

Starting from the 1960s, various non-pharmacological treatments for patients with dementia have been proposed, in order to improve cognitive skills and quality of life, to reduce behavioural disturbances and maximise function in the context of existing deficits.

There is a long tradition of psychological therapies for people with dementia, but they had seldomly been rigorously evaluated, making it difficult for commissioners and providers to plan services from a solid evidence base, and also making it difficult to draw comparisons with pharmacological interventions. However, Cochrane reviews on non-pharmacological interventions have previously highlighted the insufficiency of the available evidence.

A recent Cochrane review on cognitive stimulation (Woods et al., 2009) combined the data from nine randomised controlled trials. It found that, oer and above any medication effects, and some studies suggest that the benefits may be maintained for over a year. Recently, Apóstolo and colleagues (2014) reported that cognitive stimulation therapy had significantly improved cognition, explaining the 15.7% variability, but there was no statistical evidence of its effectiveness on depressive symptoms. This improvement was not affected by the baseline level of dependence-independence in activities of daily living.

Conceptualising dementia within the framework of a disability model highlights the distinction between the underlying impairment, resulting from pathological changes, and the resulting limitations on engaging in activity (disability) and restrictions on social participation (handicap).

Cognitive impairment is a defining feature of dementia caused by neurodegenerative conditions including the dementias. Family caregivers are also affected because of the practical impact of cognitive problems on everyday life and the strain and frustration that often result. It has been suggested that rehabilitation provides a useful overarching conceptual framework for the care and support of people with dementia and for the design of interventions to meet their needs. Recreational activities (e.g., crafts, pets) and art therapies (e.g., music, dance, art) have been often proposed as non-pharmacological treatments in dementia, and are widely utilised in residential settings.

Cognition-focused interventions as a group fall under the broader umbrella of non-pharmacological interventions. Cognition-focused interventions can be broadly defined as interventions that directly or indirectly target cognitive functioning as opposed to interventions that focus primarily on all aspects of whole person care – i.e. behavioural, emotional or physical function.

An increasing number of dementia studies describe their intervention as ‘cognitive stimulation’. Clare and Woods (2008) provided a definition which stated that cognitive stimulation:

  • targets cognitive and/or social function;
  • has a social element — usually in a group or with a family care-giver;
  • includes cognitive activities which do not primarily consist of practice on specific cognitive modalities;
  • may be described as reality orientation sessions or classes.

Several types of cognition-based interventions have been described. The potential benefits of non-specific stimulation of cognitive functioning for people with dementia have long been recognised. These interventions typically involve engaging the person with dementia in a range of general activities and discussions, are commonly conducted in groups and are aimed at general enhancement of cognitive and social functioning.

Cognitive stimulation typically involves a set of tasks designed to reflect cognitive functions such as attention, memory, language, and problem solving, combined with a reality orientation session. This training takes place in individual or group sessions with a range of difficulty levels. The fundamental assumption is that practice with specific cognitive function tasks may improve, or at least maintain, functioning in a given domain and that any effects of practice will generalise and induce a general improvement of cognitive and social functioning. There is some additional evidence that these interventions can decrease behavioural problems and improve mood.  Other authors have also reported positive results for training of basic activities of daily living.

However, some treatment guidelines have been highly critical of cognitive stimulation or training interventions in dementia in view of the risk that cognitive gains may be achieved at the expense of reduced wellbeing and adverse effects.

So, the burning question is: if the drugs don’t always work, why don’t we consider more seriously cognitive stimulation therapy? The answer is possibly in large part cultural and social. That is, medical professionals, large charities and the media, in cahoots in Big Pharma, don’t want to give up their traditional power base in treatment. Look for example at Julianne Moore on the red carpet of the Oscars last night talking about how ‘there is no treatment for dementia’. But almost certainly we don’t have that the correct organisational structures in place. There is regulatory capture, which means that drugs can rarely become recommended despite modest effects, but there is virtually no head to head comparison of the cost efficacy or resource allocation consequences of medication vs psychosocial approaches. There is no clear infrastructure subserving ‘social prescribing’, where GPs can easily prescribe such treatments, yet, in England, despite the fact that this could potentially save the NHS a lot of money, and see an improvement in wellbeing in many of its patients.

There are powerful forces at work. You have been warned.

 

References

Apóstolo JL, Cardoso DF, Rosa AI, Paúl C. The effect of cognitive stimulation on nursing home elders: a randomized controlled trial. J Nurs Scholarsh. 2014 May;46(3):157-66. doi: 10.1111/jnu.12072. Epub 2014 Mar 5.

Clare L, Woods RT. 2004. Cognitive training and cognitive rehabilitation for people with early stage Alzheimer’s disease: a review. Neuropsychol Rehabil 14: 385–401.

Woods B, Spector A, Orrell M, Aguirre E. 2009. Cognitive stimulation for people with dementia (review) The Cochrane Database of Systematic Reviews Chichester: Wiley

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Person-centred care's focus shouldn't be profit generation. But it does deserve attention in dementia.

jigsaw

Often ‘person centred care’ can be synonymous with profit generation in the private sector, hence a focus more on purses than persons as once quipped by Kate Swaffer, but it is a methodology whose roots warrant scrutiny. It gets away from the idea of patients as fodder for biochemical and neuroimaging investigations, with not much to be added by professionals. The meme that ‘there is no treatment for treatment’ plays very nicely into the medical model of dementia. However, taking a more social or psychological approach, you get a totally different perspective.

The complexity of dementia demands comprehensive individualised care that addresses physical, psychological, social, and legal issues of the persons with dementia as well as their caregivers Recently, person-centred care (PCC) has become valued in the field of dementia care. Nonetheless, PCC has been considered to be rather abstract or vague, partly as many publications are based on personal opinion, anecdotal evidence and/or theoretical constructs only.

Person-centred care is increasingly considered essential, whereas purpose-built facilities and environmental design are reported to enhance safety and to have a positive effect on behaviour. Within the UK National Health Service (NHS), the provision of person-centred services for individuals with acquired neurological conditions has been widely promoted. Services provided for people with dementia have been criticised in reports such as the UK Audit Commission’s ‘Forget-Me-Not’ which found them inflexible rather than person-centred, with poor integration of health and social services (Audit Commission, 2000).

To inform and direct service development for this clinical population, the National Service Framework for Long Term Neurological Conditions (Department of Health, 2005) originally set out quality requirements for improving PCC. PCC in rehabilitation has been defined as an approach that facilitates participation in decision making and goal-setting, client-centred education, client evaluation of outcomes, family involvement, emotional support, physical comfort, co-ordination and continuity.

Progressive deterioration in cognition, function, and behaviour make people with dementia increasingly dependent on others for normal activities of daily living. A person-centred approach is uniquely enmeshed with the pivotal importance of dignity. Dignity of identity represents a person’s subjective experiences of dignity and is related to integrity, autonomy, self-respect and social relations. This kind of dignity may be taken away or threatened by external events or by the acts of other people, for example, if an individual is humiliated or treated as an object.

Ideas about person-centred caregiving have been discussed by several authors within the gerontology literature. In the United Kingdom and elsewhere, Kitwood’s work with residents with dementia has been influential (Kitwood, 1997). This approach reconceptualises the dementias as involving processes not focused on pathology but on the social psychology of the person affected. An individual’s characteristics, including such things as the past, roles, personality, values, self-worth, spirituality, and so on, combined and defined through years of living, are often used to identify personhood at a higher level. Kitwood’s research places an emphasis on the belief that older adults should be treated as social beings worthy of relationship. Within each human being, regardless of cognitive impairments, is the desire to be respected and connected with others.

Dementia-care mapping (DCM) is a person-centred, multi-component intervention developed by the Dementia Research Group at Bradford University in the UK and is based on Kitwood’s social-psychological theory of personhood in dementia. DCM is a systematic approach for the assessment of PCC that can help to identify factors influencing behavior and to create individual person-centred care plans. DCM can also be used as an assessment for residents’ well-being.

As recent research investigations in nursing homes have emphasised, the personal relationships direct care workers forge with individual residents appear central to quality of care or quality of life outcomes on the part of residents. Evidence for improved outcomes for people with dementia through provision of person-centred care and dementia-care mapping thus far has been largely observational. However, taking a more robust scientific approach (it is mooted), person-centred care and dementia-care mapping both seem to reduce agitation in people with dementia in residential care.

Nursing staff’s person-centredness does play a modest role in relation to job characteristics and job-related well-being. Flexibility, possibly, is an essential ingredient of personcentered care. This person-centred care philosophy attempts to adapt care to the needs, preserved abilities, personality, habits, preferences, and cognitive, sensory, and physical limitations of the person with dementia. In order to do so, caregivers often have to adapt schedules, decision-making processes, and environments to the needs of the person with dementia, thus requiring a great degree of flexibility. It is currently felt that DCM is a “cost-neutral” intervention. It effectively reduces outpatient hospital appointments compared to usual care. Other considerations than costs, such as nursing homes’ preferences, may determine whether they adopt the DCM method.

The concept of person-centred care has recently been expanded to include “family-centred care” which acknowledges the important role of the family or other loved ones in the patient’s final days. Whereas experiences of having a relative with dementia in long-term care have been explored, the experience of spouses specifically is relatively sparse. As a contrast, staff on standard care wards often do not routinely complete personal profile documentation with family carers.

There has been – on the whole – a welcome recognition of the importance of a well-trained workforce to support people with dementia living in care homes. However, there is an emerging between the interventions that are routinely available and being commissioned, and the evidence base indicating benefit, arguably. In a way, person-centred care and family centred-care are not especially different what excellent caregivers, including professionals, should have been doing. Whilst nobody ‘owns’ the agenda, it would be a real shame if the marketing and corporatism o this ideology overplayed their hands at the expense of their clinical underpinnings.
References

Audit Commission. Forget Me Not: Mental Health Services for Older People. London: Audit Commission, 2000.

Department of Health (2012b). Compassion in practice: Nursing, midwifery and care staff. Our vision and strategy. London: Department of Health.

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

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