I have pleasure in outlining my final book on living better with dementia – with a focus on residential settings.
I am honoured that the three Forewords for the book all come from three individuals associated with Brighton and Sussex Medical School: Lucy Jane Marsters (clinical nursing specialist in dementia care), Lisa Rodrigues (formerly Chief Executive of the Sussex Partnership Foundation Trust, and well known campaigner in mental health issues), and Prof Sube Banerjee (Associate Dean for Strategy and Professor of Dementia; and co-author of the first English dementia strategy, “Living well with dementia”.)
Chapter 1: Introduction
This book represents the final part of a three part look at living well with dementia. Its emphasis on the more advanced stages of dementia, although the word dementia is an umbrella term for a number of conditions. English dementia policy remains, even after the publication of ‘Prime Minister Challenge for Dementia’, “on course” until 2020 on a track consisting of research, care and ‘dementia friendly communities’. However, there exists a range of “unmet needs” for all people living with dementia at all stages. For people living in later stages of dementia, and caregivers, initiatives such as INTERDEM looking at the effect of psychosocial interventions or the EU 2015-8 ALCOVE work on residential care are especially important.
This is not of course to dismiss the attempts to try to find a cure or symptomatic treatments, but it is critical that resources are allocated properly, given that dementia also presents as a formidable economic challenge. It is likely that a person-centred approach that is properly inclusive of many stakeholders, strengthened by an adaptive leadership and supportive culture, will allow a diversity of thought for policy ultimately to succeed. Care homes too are part of an active community. Specialist in-reach services are needed to be commissioned to ensure continuity of care and coordination of care; they may be even ‘cost neutral’, and at best ‘cost saving’.
Chapter 2: Quality of life and quality of care
Health and social care policy increasingly aspires to high-quality services in all settings. Long-term care facilities such as care homes and nursing homes, hereafter referred to as care homes, are residential settings where a number of people live and have access to on-site care. Measuring and improving general well-being across the population, rather than focusing exclusively on measures of economic performance, has been central to the UK Government’ s development of social and health policy. Most of the 400,000 older people living in care homes have dementia or a similar impairment and an estimated 40% of people over the age of 65 in hospital beds will be living with dementia. Traditionally the majority of quality of life research has focused on people with less severe dementia, and especially those who can provide self-ratings. A person-centred environment can serve as a non-pharmacological supportive element in retaining memory, stimulating the remaining senses, enabling therapeutic communication with carers, assisting the person to retain self-control and reducing levels of anxiety, aggression, depression and psychotic behaviour, through built “cues”.
While awareness among people with mild to moderate dementia residing in the community has been extensively studied, little evidence has been presented regarding the extent to which people with moderate to severe dementia living in residential care show awareness of their own situation and functioning. There is considerable interest as to whether certain people with dementia should be living in a residential unit or at home, and whether this affects quality of life. Analysis of good care requires reliable and robust quality indicators, which have developed across a number of jurisdictions. In a parallel debate, there is a policy interest as to whether people are best suited to dying in a hospital, a home, or elsewhere. Healthcare of care home residents is difficult because their needs are complex and unpredictable. Neither GPs nor care home staff have enough time to meet these needs and many lack the prerequisite skills and training. In particular, barriers to improved palliative care in dementia have been thought to include increased paperwork; lack of knowledge and understanding of end of life care; costs; and gaining the cooperation of GPs. To delay entry to institutional care, many European countries invest in home and community based care services.
Chapter 3: Choice and type of care
Care homes provide either residential or nursing care. The type of home that the person requires will depend on their general health and care needs. Everyone with dementia is different. Care homes tend to be demanding places, as care needs can be complex, and shortage of skilled nursing staff can be an issue. Care home providers and statutory agencies should consider how their attitudes, practices and policies can create pressure and unnecessary paperwork which ultimately reduce the capacity of care homes to respond to the needs of older people. Residential care homes provide help with personal care such as washing, dressing and eating. In some residential care homes staff have had specialist training in dementia care. Nursing homes provide personal care but also have a qualified nurse on duty 24 hours a day.
Care home fees are paid through a mixture of state (mostly local authority) and private funding. It is widely accepted that the care system in the UK is underfunded and many family members and people with dementia have to pay large costs for care. The current financial and economic climate is a significant challenge to investment in high-quality care in care homes. Changes in public funding alone do not reflect the complexities involved in decision-making concerning the residential placement of older people. The core function of a care home is to provide care. Everyone has different ideas about what they want from where they live. Factors affecting this choice might include contracts and fees, care needs, day-to-day life, and location and building. Often a move into a care home is suggested because of a crisis – perhaps an illness or a fall – but it may not always be the only solution. But other forms of housing, or one’s own home, may be more suitable. For example, extra care housing aims to meet the housing, care and support needs of older people, while helping them to maintain their independence in their own private accommodation.
Because of their core purpose, there is a framework of regulation and inspection to try to ensure that all homes perform to minimum ‘national standards’. Regulation has an important role to play in making sure that services provide safe, effective, compassionate, high-quality care. Care home providers and statutory agencies should consider how their attitudes, practices and policies can create pressure and unnecessary paperwork which ultimately reduce the capacity of care homes to respond to the needs of older people.
Chapter 4: Depression and anxiety in residential settings
The characteristics of the individuals normally associated with a higher functional independence, health status and gathering with family, friends or neighbours. Basic data on dementia and affective disorders such as anxiety and depression in care homes have become increasingly outdated, and recent estimates have arguably relied on flawed case ascertainment approaches. The observed association of quality of life with behavioural and psychological symptoms in dementia is intuitively understandable, and the negative effects of such symptoms on people with dementia and their carers are pretty well understood. Increasing problems with agitation, depression, anxiety, disinhibition, and irritability, and the consequences of these difficulties are likely to impair quality of life; as this is fairly well established now. Depression and insight significantly predicted measurement of quality of life in dementia in the moderate presentations, but cognition is not found to predict such scores.
Frustratingly, anxiety and depression symptoms and their association with components of social support have been studied rarely among nursing home residents without cognitive impairment. This is despite anxiety and depression symptoms being common and often not diagnosed. The course of depression in residential homes may be diverse, and treatment should be tailored to patients’ individual needs
Depression is the main contributor to the growing burden of mental illness in nursing-home residents it is associated with increased mortality, and use of healthcare services. There is a strong suggestion that depression is consistently associated wIn view of the under-recognition of depression in nursing homes, adequate depression management should include structural depression screening and diagnostic procedures (depression assessment). The current literature clearly documents that caring for a person with dementia can be associated with loss of mental health and subjective wellbeing. Studies have reported that 20-50% of dementia caregivers develop depression or high levels of depressive symptoms, and that these rates are stable or increasing over time. Caregivers of dementia patients also experience higher levels of depressive symptoms compared with caregivers of physically impaired older adults. The manifestation of anxiety among caregivers has received less attention.
Treatment of depression in people with dementia is a clinical priority but the evidence base is sparse and equivocal. Mirtazapine is a noradrenergic and specific serotonergic antidepressant and is used primarily in the treatment of depression. In terms of reducing depression, mirtazapine and sertraline are not cost-effective for treating depression in dementia. Caregiver education, the provision of practical support and the presence of adaptive coping mechanisms may help protect against depression. Clinically significant depression is very common among residents of care homes and is associated with poor outcomes, including frailty and increased mortality.
Chapter 5: Pain and hydration
Hydration and pain provide good examples of the importance of symptomatic treatment in residential care facilities. Good nutritional care, adequate hydration and enjoyable mealtimes can dramatically improve our general health and well-being. Because of normal aging changes, there is a reduction in reserve capacity and an inability to respond to fluid changes. Although acute dehydration may occur at any age, chronic dehydration often is related in older persons to insufficient fluid intake over time. Deciding whether to start artificial nutrition and hydration (ANH) in patients with dementia in a nursing home is a complex matter. In the United States, as in other countries, a decision is often made to start ANH (through a percutaneous endoscopic gastrostomy tube) in patients with severe dementia. In the Netherlands, however, it is common practice to forgo ANH in patients with severe dementia.
Drinking water and other fluids is fundamental to health and well-being regardless of the person or their situation. However age-related changes make older people more vulnerable to water imbalance and many older adults do not reach their recommended daily intake of oral fluids. Dehydration is the most common cause of fluid and electrolyte imbalance in frail older people which is associated with significant morbidity and mortality. In long-term care facilities, many residents might be mildly dehydrated in the absence of acute illness; this mild dehydration may go unnoticed until it becomes more severe. A practical guideline for detecting and monitoring dehydration in nursing home residents is needed. Drinking is indeed a complex behaviour involving multiple physical and psychological factors played out in varied social environments. An integral part of hydration care is recognising risk factors for dehydration. Hydration devices to support fluid intake appeared to be underused in both settings. The ubiquitous use of a straw to assist drinking may relate to its availability, disposability, lack of stigma, encouragement by staff, lack of awareness of other assistive hydration devices and because it is a low tech and simple solution.
Pain prevalence is high and varies considerably across Europe. The prevalence of pain varied from 32% in Italy, to 43% in the Netherlands, and 57% in Finland. In 50% of cases, pain was present daily.
Pain assessment in nursing home residents with dementia is challenging due to both cognitive and communicative impairments. Poor management of pain in people with dementia has been attributed, in part, to the difficulty in accurately assessing the presence and intensity of pain, especially as a person’s cognitive and communication abilities worsen. Under-treatment is especially marked in the presence of frailty, leading to behavioural disturbances such as agitation, depression, anxiety and reduced quality of life. Care home staff may have to increasingly rely on surrogate reports or behavioural indicators of pain. It has been suggested that the knowledge, attitudes and beliefs of nursing staff may contribute to the difficulties surrounding pain assessment and management in people with dementia. Although most residents considered pain as adequately controlled, a closer look confirmed that many still suffer from high pain intensities.
Effective pain management in nursing home residents with dementia is a complex, multi-faceted, and interdisciplinary process. Pain is common in nursing home residents and is often underreported, under-assessed, and consequently under-treated. For example, underprescription of opioids for pain relief in residential aged care is a problem, with some practitioners fearful of residents becoming addicted to prescription opioids or experiencing adverse side effects. Because of the high vulnerability of older people, pain substantially decreases daily activities and reduces quality of life, which in turn leads to higher health care costs. It has been estimated that 45% to 80% of nursing home residents report persistent pain, making it one of the most commonly reported symptoms in long term care facilities. However, unreasonable failure to treat pain is rightly considered as unethical and an infringement of basic human rights. Pharmacists may also provide pharmaceutical services to people in the advanced stages of dementia living in care homes. Furthermore, Namaste Care is a multidimensional intervention seeking to engage people with advanced dementia and enrich their quality of life through sensory stimulation, shared activity and increased social interaction. Comfort is a primary aim of the care programme, which includes formal pain assessment, as well as increasing care staff’s awareness and responsiveness to distress.
Chapter 6: Oral health
Whole person care involves mental health, physical health and social care. It is not easy to see at once how oral health fits into this.
The need for good oral health is significant with older adults for a variety of reasons. The progression of dementia varies enormously, as does the ability to cope with dental treatment. Some people are comfortable with a visit to the dentist, while others find the whole experience very distressing. The dentist, together with the person with dementia and their family or carers, will discuss treatment needs and agree on the best treatment plan. A dentist can provide guidance and support on how to assist in cleaning another person’s teeth. The technique will vary depending on the individual concerned. Oral health in nursing homes has sometimes been described as “deplorable” with evidence that “a high proportion of elderly nursing home residents suffer from poor oral hygiene and oral health neglect”. Oral problems are partially, perhaps, a result of barriers to dental services and changed self-perception of oral health on the context of multi-morbidity.
There are two main types of dental disease – gum (periodontal) disease and tooth decay (dental caries, more commonly known as cavities). Gum disease can cause inflamed and bleeding gums, gum recession (where the gum tissue is reduced, causing the roots of the teeth to become exposed), loose teeth and bad breath. Both can cause discomfort or pain and can lead to the development of infection. Indeed both pain and infection can worsen the confusion associated with dementia.
Oral neglect, as well as poor oral health and oral hygiene, is highly prevalent among the institutionalised elderly. Residents with dementia, who are functionally dependent and cognitively impaired, appear to be worst affected. This is a challenge to the dental profession as the proportion of frail elderly with dementia and disabilities is projected to rise over the coming decade in most developed countries of the world.
Problems swallowing (dysphagia) and bad oral health have been found to be strongly associated with aspiration pneumonia in frail people. Consequently, adequate oral health care in care home residents with dysphagia may decrease the number of respiratory pathogens and diminish the risk of aspiration pneumonia. Furthermore, improvement of oral health care may improve the swallowing and cough reflex sensitivity. Risk factors of aspiration pneumonia, such as dysphagia, should be prevented in frail older people whenever possible. Aspiration pneumonia, an inflammatory condition of lung parenchyma usually initiated by the introduction of bacteria into the lung alveoli, is causing high hospitalisation rates, morbidity, and often death in frail older people. There are therefore clear repercussions of bad oral health and physical dis-ease.
It is argued that in the last three decades, the oral health of nursing home residents has worsened as a consequence of inadequate mouth care. The trend toward worsening oral health among nursing home residents is complicated by the rising numbers of persons entering nursing homes with some or all of their natural dentition; more than half of all nursing home residents are dentate. Residents, especially those with dementia, require meticulous daily mouth care because they often lack access to routine dental care. Older adults form plaque more quickly than their younger counterparts when mouth care is not routinely performed; this may be due to gingival recession, which exposes more tooth to the oral environment, and to reduced salivary flow.
The majority of nursing home residents arrive dentate. As their dementia progresses, the person may lose the ability to clean their teeth, or lose interest in doing so, and carers may need to take over this task. Older adults experience faster plaque production than younger adults because of the dual effects of gingival recession and reduced saliva production. The reasons for the poor oral health of nursing home residents may be multifactorial. Physical and cognitive impairment makes oral hygiene difficult, making residents increasingly dependent on other people and often resulting in poor oral cleanliness. Because reduced cognitive functioning frequently results in greater levels of dependency, including for oral care, carer are of crucial importance in maintaining oral health.
Poor oral hygiene causes periodontal disease which in turn creates tooth loss. The remaining teeth shift, causing loss of occlusal surfaces and subsequent chewing and swallowing problems. These problems place older adults at risk for malnutrition. Other systemic diseases associated with poor oral hygiene include aspiration pneumonia, diabetes, and coronary artery disease. The need for good oral hygiene is complicated by the dependence many nursing home residents have on others to provide basic care. Most require assistance in at least one activity of daily living while more than half are dependent on others for all activities of daily living, including mouth care. In addition, dental treatment provision to nursing home residents tends to be emergency-based, with little time spent on prevention, especially among vulnerable residents with cognitive and physical impairment. Oral health is therefore intimately linked to living better with dementia in residential care settings.
Additionally, the rate of edentulism is declining; the current generation of elderly has more teeth than previous generations and will live longer than their parents. Many older patients have no remaining teeth and are termed edentulous. These patients may or may not be wearing full or complete dentures and complete denture wearing may be rendered more difficult with the advent of dementia. Tooth loss from periodontal disease causes the remaining teeth to shift to the point where occlusal surfaces no longer articulate, interfering with chewing and swallowing functions and placing residents at risk for malnutrition. The reason for this is that successful (complete) denture wearing depends to a great extent of what is termed neuromuscular control. It is not uncommon, therefore, for carers of edentulous patients who are living well with dementia to request that new dentures be made for such patients. In reality, new dentures may not result in an optimal outcome, although the concept of template or copy dentures makes it easier for patients to adapt to new dentures.
The combination of increased dependency and increased retention of teeth will lead to a high-risk cohort with complex dental needs and more prone to dental diseases. Residential aged care facilities are residential facilities provided to frail elderly whose care needs are such that they no longer remain in their homes. Not only does the nature of the disease result in deterioration of oral health; anticholinergics and neuroepileptics used for its treatment result in salivary gland hypo-function that increases the risk for oral and pharyngeal diseases. One of the main side-effects of these drugs is a dry mouth. Saliva acts as a lubricant and dry mouth can cause problems with dentures, including discomfort and looseness.
Moreover, care-workers have reported several “barriers” in caring for elderly with cognitive impairment and behavioural difficulty, with oral hygiene among the most difficult care-giving task. This might reflect differences in culture between dental and nursing staff. It is possible that the dental professionals’ knowledge about the consequences of neglected oral care make them believe that oral care is a more important part of total care than do other health professionals. In addition, many nursing homes aim not to use force or restraint. The law says that before a legal decision about the use of force or restraint is made, trust-giving behaviour should be attempted.
Nevertheless, there is emerging evidence that there is a lack of knowledge of the specific oral hygiene requirements of people living with dementia, or do not have the time needed for adequate oral care. Nursing home culture change aims to improve resident quality of life and staff well-being by aligning structures and processes of care with residents’ needs and preferences. It embraces a comprehensive philosophy so as to structure practices and policies such that they are consistent with individuals’ welfare. Within this whole person approach, discrete components of culture change practice are many, and include promoting the resident’s meaningful engagement The ultimate vision of a person-centred culture change is that individualised care will improve quality of life and outcomes. Outcomes of interest include those of both a psychosocial nature (e.g., boredom, helpless) and, increasingly, of a health-related nature (e.g., physical function, pain, pressure ulcers). What may be missing from the promotion of culture change is the incorporation of individualised, evidence-based protocols shown to improve daily care. And there is a strong social component to the effects of oral health malaise.
So, oral health in living better with dementia in the residential care setting is very much a whole person affair.
Chapter 7: Centres of care around the person and family
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, 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.
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 particularly influential. 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.
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.
Chapter 8: Mobility and falls
In the UK, long-term continuing care for older people is principally provided by independently owned (small, medium or large businesses and charities) care homes. The typical resident is statistically female, aged 85 years or older, and in the last years of their life. The majority of care home residents have dementia and take seven or more medications. Many, it turns out, live with depression, mobility problems and pain. But it is noteworthy he mobility of older adults with dementia often declines following admission to a residential care setting.
Maintenance of mobility is an important component of quality of life for all individuals, including those in long-term care facilities; in fact, long-term care residents and staff identify mobility as pivotal to residents’ quality of life. Mobility limitation leads to increased health care utilisation, pressure sores, muscle atrophy, bone loss, pneumonia, incontinence, constipation, and general functional decline. Sedentary behaviour and limited mobility, common among older adults in nursing homes, can contribute to disability in activities of daily living and increased need for personal care.
Almost 90 percent of nursing home residents have some type of mobility limitation which can negatively affect their health and general well-being. When residents’ mobility is compromised, not only do they experience difficulties performing daily activities such as walking, toileting, and socialising, but they are also prone to falls, pressure ulcers, incontinence, and pneumonia – all of which can lead to complications and hospitalisation. Those with reduced mobility are more likely to experience adverse events such as falls, incontinence, pressure ulcers, and pneumonia, all of which reduce quality of life and exponentially increase the cost of resident care. Therefore, interventions directed at improving mobility and activities of daily living are an important research focus. Some individuals in long-term care may have their needs overlooked for a variety of reasons (e.g. complexity of behaviour). However, residents rely on primary health care services, for medical and nursing support, and access to specialist services. Despite evidence that low-intensity exercise can improve physical performance and activities of daily living among frail older adults in long-term care facilities, residents still spend the majority of their waking hours lying in bed or sitting.
Nursing home residents with cognitive impairment represent a large portion of the nursing home population and are at an increased risk of falling. Falls in all residential care are hugely important, of course. Some have challenged the American Geriatrics Society and British Geriatrics Society guideline which states that there is insufficient evidence to support any recommendation to reduce fall risk for older people with cognitive impairment.
If injuries and falls can be prevented, the long-term survival and quality of life of institutionalised older adults can be extended. Emerging evidence exists that even mild injury has devastating outcomes for older adults. There are multiple known risk factors for falls. Research findings have shown that factors contributing to falls are multifactorial, complex, and interrelated, and can be fixed or transient. Fixed intrinsic factors (e.g. visual changes, comorbidities, muscle weakness, and impaired balance) by definition do not change rapidly over time and are therefore poor indicators for change in risk status. The risk of falling and sustaining an injury as the result of a fall increases with age. Falls often indicate underlying frailty or illness and thus require a broad approach to assessment and management. Transient factors that change over time (e.g. elevated temperature, dehydration, room change, or a medication change) may be more sensitive to changes in fall risk for nursing home residents and indicators for the need for additional interventions.
Due to the large burden of injurious falls, fall incidents put a high and increasing demand on healthcare resources. Up to 20% of admissions to general hospitals for hip fracture are from care homes. Nursing home residents with dementia have substantial care needs. The complexity of falls is reflected by the high prevalence of pre-morbid functional loss and limited mobility, coupled with multiple medical comorbidities, high rates of polypharmacy and a high prevalence of dementia. Older persons are at an increased risk for serious injuries even after a minimal trauma, such as a fall, due to underlying medical conditions like osteoporosis. Approximately a third of older fallers sustain fall-related injuries, which require medical treatment. Most evidence about successful prevention strategies, however, is derived from less frail and more clinically stable people living in their own homes.
There is considerable debate as to whether “multi-faceted interventions” (which included factors such as removal of physical restraint, falls alarm devices, exercise, calcium and vitamin D treatment and changes in the physical environment) are to be statistically significant in reducing falls. A Cochrane review has shown, though, that multi-faceted interventions to reduce falls in care homes were effective if they were coordinated via multi-disciplinary teams. The strategies usually promoted are: falls risk assessment; mobility assessment; use of hip protectors; calcium and vitamin D supplementation; continence management; exercise programs; appropriate footwear; medication Falls may also lead to loss of function, anxiety, depression, impaired rehabilitation, increased length of hospital stay, and inability to return to previous residence, thus contributing to additional health and social care costs. Falls and fall-related injuries among nursing home residents are serious concerns for health care providers, administrators, nursing home residents, and families.
Falls in institutions may even result in complaints or litigation from families. All of this leads to anxiety for staff and proprietors, who require guidance on best practice in preventing falls and injuries. The use of chair restraints has even been associated with higher risks of falls among residents without dementia. Fall risk may be increased by the use of psychotropic medications, particularly sedative hypnotics, antipsychotics, and antidepressants, which are more commonly prescribed to people with dementia. Clearly any attempts by the medical profession to reduce wellbeing amongst people living with dementia, whatever the well meant intended consequence, need to be carefully analysed.
Factors associated with fall prevention may be amenable to intervention (balance, anxiety, and medication use) or need to be considered when designing any approach to intervention (attention and orientation). Potential interventions include exercise comprising balance training, medication review, and strategies to understand and manage poor attention, and agitation. Falls affect rehabilitation, physical and mental function, can increase length of stay in hospital settings and the likelihood of discharge to long-term care settings. Fear of falling due to falls can further lead to loss of function, depression, feelings of helplessness, and social isolation; research into this is to be welcomed, as is confidence of people in not falling.
Chapter 9: Activities
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 and other forms of dementia, physical disabilities, degenerative illnesses such as Parkinson’s, 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.
Chapter 10: Cognitive stimulation
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 combined the data from nine randomised controlled trials. It found that, over and above any medication effects, and some studies suggest that the benefits may be maintained for over a year. 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.
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.
Chapter 11: Spirituality and sexuality
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.
Chapter 12: Neglect and abuse
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.
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.
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.
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.
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.
Chapter 13: Physical environment
There has been increasing interest, overall, in the use of non-pharmacological interventions to improve dementia symptoms and the wellbeing of residents with dementia and their carers. Previous studies examining modifications to the built environment have drawn from a number of design principles and frameworks for dementia care homes and suggest that purposeful design of one’s surroundings may play an active role in promoting a sense of well-being and improved functionality. The increased sensitivity of persons with dementia to environmental conditions occurs because the illness can reduce the individual’s ability to understand the implications of sensory experiences in residential care settings. As a result, agitated behaviours, increased confusion, delusions, and other psychiatric disturbances are readily triggered by environmental stimuli.
The focus of long-term care settings for the elderly has gradually changed from curing diseases to improving their quality of life, especially in countries which have been experiencing the aging of the population. In terms of the concept of care, the term “person-centered care” has already generated a lot of attention. Many terms (e.g., resident-centered care, individualised care, consumer-directed care, patient-centered care, self-directed care) share the same basic concepts and definitions. A person-centred approach is considered to emphasise residents’ unique personal preferences and needs in order to guide caregivers, thus enabling the individualisation of care plans and care routines to improve quality of life and compensate for their impairment. Person-centered dementia care requires shift in attitudes, behaviours, and systems replacing the traditional model of care that primarily focuses on the “tasks.” This is a best practice concept guiding efforts to improve residents’ quality of life in long-term care facilities. The care philosophy recognises that individuals have unique values, personal history, and personality.
The environment needs to be able to support remaining ability rather than operate to diminish it, and to support the development and maintenance of relationships. The design of physical environments within residential aged care facilities (RACFs) can improve or worsen wellbeing in people with dementia irrespective of level of care from nursing staff. In Australia, the Building Quality for Residential Services Certification guides the building quality of RACFs in general, but this legislation does not offer any standards catered specifically to a person-centred dementia unit design. A groundbreaking assessment tool for the ward environment was developed in collaboration with NHS trusts participating in “The King’s Fund’s Enhancing the Healing Environment” programme. Since then over 70 care organisations have been involved in field testing the tools. These tools have been informed by research evidence, best practice and over 300 survey responses from those who have used the tools in practice. Each of the sections draws on this evidence to develop a rationale for effecting change in care environments. This rationale also addresses, to some extent, the visuospatial experiences often associated with dementia. Making accommodations for the cognitive problems which people with dementia face is a fundamental aspect of overcoming disAbilities: for example the intelligent use of signage in care homes can make a tremendous difference. It is also known, further, that intelligent use of colours and textures can enhance the lived experience of people living with dementia in residential care settings.
On the other hand, the policy of “aging in place”, meaning the ability of individuals to remain in their home in the community, is a consistent wish and expectation of middle aged and older people. Home adaptations (environmental improvements, or in the disability legislation, reasonable adjustments) and assistive technology provision are an increasingly attractive means of helping older people to maintain their independence and enhancing their quality of life. There has been, frustratingly, little systematic research into the feasibility and cost of pursuing such a policy. The lack of definitive evidence of a link between the quality of the environment and the wellbeing of people with dementia living in that environment is somewhat surprising given the evidence that is available on the beneficial effects of specific environmental interventions. “Housing with care”, such as extra care and continuing care housing, is becoming a preferred alternative amongst commissioners of adult social care to care homes for people with dementia. Contemporary research suggests that many people with dementia can lead good quality lives in extra care housing, at least in the mild to moderate stages. The availability of gardens or outdoor areas in residential homes may offer a range of benefits for people living well with dementia, including opportunities for active engagement with gardening, walking in an outdoor environment, and sitting in soothing surroundings.
Chapter 14: Staff learning and development
In trying to improve the quality of care provided to people with dementia, researchers have primarily looked at establishing a better understanding of care staff attitudes and workplace experiences in the hope that, by developing ways in which these can be changed, practice can be improved. This is clearly a question of specialist staff training, rather than vague concepts of being ‘friendly’. For example, there is also evidence to suggest that positive care staff attitudes, particularly ones focused on ‘person-centredness’, are related to better job satisfaction and that staff who report higher levels of satisfaction provide better care. Negative attitudes towards the person with dementia are regarded as an obstacle to care and can result in staff focusing on the resident’s physical deficits. In addition, continued high levels of staff stress can lead to burnout, which causes more negative attitudes towards the person with dementia
There have been mixed findings from studies evaluating the effectiveness of staff training programs, the majority of which have utilised uncontrolled research methodologies, and have often recruited small samples from only one or two facilities. Training programs that provide staff with both information-based sessions and additional support to help facilitate change appear to be more likely to promote continued improvement in skills. This approach typically includes extended on-the-job training to enhance learning of new skills, through ongoing expert consultation, modelling of appropriate practices, or supervision and feedback by specialists.
But this is all hugely complicated, it turns out. By pointing out that “mastering the generation of good changes is not the same as mastering the use of good changes,” Berwick (2003) highlights the paradox inherent in the diffusion of innovations. Across healthcare disciplines and professions, nationally and internationally, concerns are being raised about the need to improve the transfer of knowledge from the scientist to the clinician. The use of peer support groups represents an alternative approach to facilitate the development of staff skills that is not dependent upon the continued involvement of external specialists. In this approach, staff members are encouraged to meet regularly in small groups, to support each other in their day-to-day work and in the use of new skills for the management of residents with behaviours which suggest a failure of communication.
There is a paucity of extensive description of registered nurses’ education and their views on competence development in residential care. There is growing evidence that care home residents have unmet health needs, may be admitted to hospital unnecessarily and that their dignity may be affected by poor access to healthcare. Many studies into educational programs for nursing staff in long term care settings have very small sample sizes, non randomised designs, designs without control groups or a low response rate. There has been much interest in England in promoting training among professionals working with people with dementia. This reflects concerns that people working in social care services providing support for people with dementia are the staff who are least likely to have been offered or to have attended any training. The Quality Outcomes Framework, used by the National Health Service to ensure that primary care across the UK is systematic and evidence-based, does not address residents’ needs. On the other hand, there is much support for the need for increased education for long term care staff. For instance, a goal of the CARES® (Connect with the resident; Assess behavior; Respond appropriately; Evaluate what works; Share with the team) program has to provide a portable, self-paced, interactive training program to help nursing assistants and other nursing home staff acquire knowledge about effective treatment and management of dementia in long-term care settings.
Residential homes are most likely to offer good care when they are firmly rooted in their communities, and where individuals are respected for the persons that they are. An enriching environment, perhaps with meaningful environment, effective design, and a person-centred culture might go a long way to achieve better care homes, and we need to know from research what this involves. But it’s crucial that this research into care, hopefully of high quality as well as good quantity, isn’t left on the shelf for too long, and is applied in service provision as soon as possible.
Chapter 15: End of life
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.
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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.
Chapter 16: Life Story
A life story is the essence of what has happened to a person. “Life story work” is not just about gathering information about a person’s life. It can cover the time from birth to the present or before and beyond. It includes the important events, experiences, and feelings of a lifetime. It can be a very helpful tool for dementia care.
Someone’s life story describes a human process uniquely lived by an individual. It directs the individual’s way of looking upon her self or himself and is, therefore, an important component in a person’s identity. To have a feeling of personal value, it is essential that the individual is seen. Life story work can be helpful in understanding more about the person’s interests and preferences. Listening to someone else’s story is a powerful way of bestowing value on that person. From birth to death, people live through many struggles, joys, relationships, triumphs, and disappointments that structure the meanings assigned to their lives.
Despite the progressive nature of dementia, persons with dementia show they still had the ability to recall past memories and to experience improvements in their perceived wellbeing. This provides an opportunity for care staff and other professionals to use life review and life story book as a part of care activity to improve and maintain the wellbeing, cognitive function and mood of individuals with dementia as long as possible. The emphasis on individual’s life stories and experiences appears to help staff to get to know residents better, and offers the potential for more individualised, person-centred care which recognises the importance of the person’s biography. But life story work is not just about gathering information about a person’s life. What is important is the way in which the life story information is gathered. The challenge is to ensure each person lives well. This can be achieved by really getting to know the person through the development of a life story and focusing on the person’s abilities now, what they were and what they are interested in.
There is evidence to support the view that life story work can improve the relationship, whether family or professional, between the person with dementia and their carer(s). Persons are likely to describe life story work as an enjoyable activity. However, it is not just the activity that made the event enjoyable, it was aspects of companionship that accompanied the sharing of the book. Benefits reported usually include enhanced well-being; improvements in mood and some components of cognitive function; and reductions in disorientation and anxiety and improvements in self-esteem, memory and social interaction. Life story work offers a chance for family carers to illustrate the personhood of their relative; and allows care staff to get a sense of the person behind the dementia and make links between the person’s past and the present, so helping them respond more sensitively to need. Kitwood himself developed a framework of person-centred care that acknowledged the person with dementia’s sense of self, supporting care staff to act in ways that promoted a person’s sense of identity, autonomy and agency.
There is much debate in the literature as to what extent the self persists or diminishes in people with dementia. Some researchers contend that the self remains intact throughout the course of dementia. The common failure to recognise the individual’s continuing awareness of self can lead to low expectations for therapeutic intervention, to interactions that are limited to the task at hand (such as activities of daily living) and, therefore, to less than optimal experiences for a given level of dementia. When a family member gradually loses the ability to tell or remember his/her life story, close family members often support the patient by taking over the storytelling or adding details to the story. Previous research has shown that this type of collaborative storytelling can be a deeply moral activity for the patient and his/ her close relative(s) in that there is a strong commitment to supporting the patient’s identity through the storytelling. Spiritual reminiscence, a type of narrative gerontology, has an important place in individual and community experiences of ageing. It is a way of telling a life story with an emphasis on what gives meaning to life, what has given joy or brought sadness. The process of spiritual reminiscence can identify issues of anger, guilt, or regret.
A number of challenges can potentially present when using life story work with people with dementia. Private and personal stories were sometimes divulged during the life story work process. Also to have a life story book that is rushed, contains errors or is of poor quality somehow detracts from the person and their life. There is a need for a final quality checking process that includes the person with dementia and family members before life story books are completed. But life history information can be recorded in a range of different ways including life storybooks, leaflets, collages, memory boxes and/or electronic formats.
Chapter 17: Home care
Dementia is not just about raging, but aging in place has emerged in international policy as a desirable societal image of growing old in a familiar environment. The majority of older adults prefer to continue to live in their current home and maintain their daily routines. Research has illuminated the ways in which living at home promotes a sense of personhood and “normality” in spite of multiple personal losses, age-related declines and chronic illness. The adverse consequences of relocation include stress, isolation, weight loss, depression, financial burden, and loss of personal possessions and personhood.
In particular, the number of persons with dementia who live at home for a longer period of time after diagnosis is increasing. There is a need for more knowledge about everyday life of persons with a dementia; particularly the lived perspective of persons who live alone. The wellbeing of people with dementia, living at home or in an institution, is influenced by several clinical variables, including cognitive deficits, behavioural and psychological disorders, degree of autonomy, and dementia staging. Analysis of cross-sectional data has, interestingly, revealed a lack of linear relationship between wellbeing and cognitive functioning for people with dementia living at home and in an institution. This observation is confirmed by the results of other cross-sectional studies.
The disappointing success of drug therapies in the dementias has, for many, underscored the need for disease management strategies that include non-pharmacological interventions and support for patients and their caregivers in daily life, especially in the home. Although, not much is known about what constitutes best clinical practice for people with more advanced stages of dementia, most European countries’ policy is to try to keep people at home as long as possible, considering admission to a nursing home as a marker when the family is overwhelmed by the patient’s cognitive and functional impairment. But there are considerable jurisdictional differences, a reflection in part on the funding basis of health and social care in different countries. Notwithstanding, a primary goal of home care is to provide high-quality services at home, thus allowing people to age in place, educate individuals about living with their long term condition, and avoid or delay hospitalisations. The aim of home care is ultimately to provide community-based care based on individual choice and autonomy.
For such an approach to succeed, one has to have an accurate idea of what a person with a cognitive impairment can do as well as what he or she cannot do. Activities of daily living (ADL) comrpise an useful construct for working out whether an individual will be able to perform well at home. Retention of ADL performance is typically associated with personal, familial, and financial benefits, such as increased quality of life, decreased caregiver burden, and reduced care costs, as well as societal benefits such as a reduction in institutional rates. Basic ADL (B-ADL) is commonly defined as those most basic life skills constituting the ability to care for one’s self, which includes bathing, dressing, toileting, eating, and grooming. Instrumental ADL (I-ADL) refers to more complex life skills for managing family and home environment, which includes cooking, cleaning, and financial management.
In persons living well with dementia, residence at home depends on the size and the strength of the family networks but also on the availability of care services, which varies across countries and regions. In general, across many jurisdictions, two-thirds of people with dementia are cared by their families. In most cases, the best housing for people with dementia is their own home, close to the family and surrounded by the usual social environment because social environment is important for psychological balance in the elderly including people living with dementia. Here the existence of what is ‘around’ in the dementia friendly community becomes very relevant (e.g. how acccessible and inclusive are the built environments? how good is the local transport infrastructure? how good is health and care coordination in the locality?)
Dementia significantly alters family life, forcing caregivers to face important changes in their lives and usually coming to a progressive decline in physical and psychological state. Continuity of care, which involves health promotion, prevention, self management, disease control, treatment and disease palliation as applied to patients with dementia, requires interdisciplinary teams formed by professionals who provide distinct health and social services and ensure continuity of care with patient and family commitment. Cognitive rehabilitation, introduced to improve cognitive decline, seems to improve, with varying degrees of success, daily living activities and the satisfaction of person with dementia (PwD), but this is most noticeable at an early stage of the disease. Health professionals should train or educate caregivers to improve their level of competence. As most patients with dementia reside in the community, any intervention designed for the home setting is especially advantageous.
In recent years, attention has turned to the possible role of physical exercise in the treatment of dementia, based on growing evidence of a link between exercise and cognition. Among persons with Alzheimer’s disease or other dementias, typically between 60 and 70 percent live at home where four out of five are cared for by family members. To illustrate, it has recently been mooted that a physical exercise intervention delivered by caregivers to home-dwelling patients with dementia is do-able, and associated with a trend for improved functional performance in this group of frail patients. Given the limited efficacy to date of pharmacotherapies for dementia, one can easily argue that further study of exercise intervention, in a variety of care setting, is warranted. Such interventions could result in improved quality of life for the person with dementia, reduce the physical and emotional burden on their informal carers, and reduce the costs to the community associated with community support and residential care.
Little is known about the consequences for the PwD of the quality of care provided by family members. But we do happen to know there is a vast army of unpaid family caregivers supporting people living with dementia, without whom the care and support structures would implode? Is care that is considered to be of high quality actually beneficial to the PwD, and if so, in what ways? Because the caregiver role is usually unanticipated, learning to become a caregiver typically occurs ‘on the job’. As a result of lack of preparation, caregivers adopt a variety of informal caregiving styles, some of which may be less than optimal or even harmful.
Physicians and other health care professionals, assisted living providers, policy makers, investors, consumers, and advocates wish to understand the impact these various processes and structures have on length of stay and ability to “age in place” in assisted living settings. Over 70% of American seniors live in private homes, which is where many prefer to be and stay. Older people fear loss of independence more than death, and independence is a major factor in quality of life in persons with dementia. Assisted living (AL) is an important and growing option in various nation’s long-term care system; indeed there is what some have articulated as a “long term conditions care revolution”. Due to differences, perhaps, in the philosophy of care among AL providers, there is considerable variation from one assisted living residence to another in structure, process (e.g. staffing ratio and nursing hours), type (e.g. specialised and nonspecialised care), and size of setting.
In research, more focus has been put on the situation of people with dementia who live with a spouse than those living alone. As the care needs of those living with a spouse becomes manifest, they are more likely to get around the clock support and the help needed in order to maintain a structured everyday life. Spousal carers play an important role for the person with dementia, and they contribute with household tasks as well as with the basics of survival. The spouse provides important support and care in the management of everyday life. Spouses especially, have reported feelings of depression and social isolation during the disease process. The feeling of isolation can occur due to reduced possibilities of talking to the person with dementia on the same premises as earlier on. Informal caregivers can feel that they are obliged to provide care, even if this is of their own free will, and be disappointed because this help can be taken for granted by the health care system. Research indicates that people with dementia who have a manifest care need and who live alone are more vulnerable than those who live with a spouse. They also live in danger of not managing their hygiene, not dressing properly, and even leaving their own home in search of a ‘home’.
In the UK, national guidelines from NICE and SCIE and the recent National Dementia Strategy both propose a systematic approach to the long-term support of people with dementia in the community,to correct the consistent deficits in care identified by a range of organisations. Home healthcare is proven to deliver better outcomes for patients, yield lower costs and reduce admissions to hospital. Home-based models of care are especially effective for patients with multiple diagnoses and co-morbidities with a high risk of hospitalisation. Today, 25% of all inpatients have a diagnosis of dementia although usually this is not the reason they come into hospital. It is widely accepted that many of these admissions could be prevented if patients and their carers were better supported at home. The challenge is to ensure that any new service model gets to the heart of the unmet needs.
It has been concluded that to implement effective service delivery, the experience of caregivers needs to be better understood. Carer service choices are affected by a complex array of other factors. These include individual personality traits – carers, for example, have varying levels of tolerance for their situations and the emotional, physical and financial costs of caring.
Respite services are part of social policy intended to relief the burden of care and to support caregivers’ coping strategies. Previous studies have pointed to the importance for caregivers to have private time and space, have highlighted that respite allows caregivers to re-assume a sense of their original lives. However, their precise effectiveness remains somewhat unclear and gender inequality in their provision has been observed in some quarters.
Another key policy consideration is “respite”. Conceptually, “respite” can be defined as: “A pause, a temporary cessation, or an interval of rest.” For the wellbeing of people with dementia living at home, social care groups can be a crucial service. They also give the carer an opportunity to get some respite. Social care groups are therefore an important social activity for those living with dementia in the community. But not only does the availability of these social groups have to be recognised; the well-being and social experience gained through these groups also has to be analysed.
Services such as respite, either in the PwD’s home, in a day care centre or in a residential facility, can reduce this burden, easing-albeit temporarily-carers’ physical and emotional workload. The general impression is that respite services are under used, with only 30% of carers of PwD reporting having used a respite service even where referral has been made and services are readily accessible. It is somewhat surprising that the actual usage of formal respite services by carers of persons with dementia has been repeatedly shown to be relatively low. Possible conclusions here are that if respite services are under-utilised, then they may not be satisfying carer needs as identified above or there are negative connotations associated with its use.
However, debate by key researchers in this area has determined that respite has a dual conceptualisation. Respite can be seen both as an ‘outcome’ or as a ‘service’. Respite services may be delivered informally by family and friends or it may entail the use of a formal service. Formal respite services encompass different types of services, which range from in-home, adult day care centres, residential aged care facilities to hospitals. The type is determined by the needs of the carer and the person with dementia and the availability of services in the locality.
Chapter 18: Conclusions
The conclusion to this book will draw on the emergent themes of the ambition to live better in more advanced stages of dementia, whether in a residential care setting or home. Whatever the care setting, certain behavioural problems, including aggression or agitation, might be dominant, or a person’s own care needs will need to be met. Fundamentally, the book will argue that a person-centred or family-centred approach is needed to maintain a culture of viewing a person with advanced dementia with respect and dignity; and approaches such as life story are pivotal, which might acknowledge, for example, individual differences in sexuality or spirituality. It is hard to escape that some people in residential care, or at home, will reach death sooner rather than later, but the aim of policy should not be for such people to live in fear of dying, but to lead enriched lives. For such policy to work, the immediate environment of that person with dementia and networks must be enriched, and full of sources of cognitive stimulation including meaningful activity. Addressing clinical needs, such as mobility, pain or hydration are inevitably essential too; particularly relevant to service providers will be identifying relevant morbidity, such as co-commissioning for frailty and dementia. For residential care, barriers to good wellbeing for residents might be problems in the culture of staff, and at one extreme everyone needs to be vigilant about possible neglect or abuse. The idea that residential care settings or even people living with dementia being part of a community, given this backdrop, will take on a real significance, and a sophisticated research strategy to develop service provision will be critical for a sustainable outlook.
