The use of life story work with people with dementia to enhance person-centred care

mckeown j., clarke a., ingleton c., ryan t. & repper j. (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5 , 148–158 Background. Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. Aims and objectives. The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. Design and methods. The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. Findings. Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. Conclusion and implications for practice. Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.     

Family care-giving for people with dementia: some implications for policy and professional practice

The objective of this paper is to describe one study undertaken in the north of England which sought an understanding of family care-giving for people with dementia. Data were collected by interview and diary with 14 family carers, by questionnaire with 60 professional carers, and by interview and diary from nine case studies. Family carers were found to value their continuing relationship with the person with dementia. This emphasis on their relationship together influenced the contact which they had with professional carers. The implications of this research for policy and professional practice are explored through illumination of the tensions in professional responses to family carers.     

Pain in elderly people with dementia

Aging is associated with an increased risk of cognitive impairment, such as Alzheimer's disease, vascular dementia and frontotemporal dementia. These diseases not only impair brain tissues and the nervous system, but also affect patients' verbal and non-verbal communicative ability. It is difficult, for instance, to assess pain in the cognitively impaired elderly because pain perception draws heavily on a patient's subjective interpretation and tolerance level. To seek an effective solution for pain detection in patients with dementia is therefore essential. From a systematic literature review covering the past decade, this paper presents a synopsis of the difficulty of pain assessment in the elderly with cognitive impairment, changes in the academic concept of pain, and explores factors resulting in obstacles to pain recognition. The obstacles to pain assessment derive mainly from three general factors. Firstly, classic definitions of early stage pain are inappropriate when applied to the elderly with cognitive impairment. Secondly, pain indicators are also unclear for this population. Thirdly, pain instruments and informants are ineffective in evaluating elderly patients with varying cognitive levels. To address these obstacles, a sound, multifaceted model of pain assessment for elderly patients with different severities of cognitive impairment is presented. On the basis of the above literature review, multiple methods for detecting aspects of pain in elderly people with cognitive impairment is recommended. To test the feasibility of the multidimensional model of pain assessment, further study is needed.     

Pain assessment in people with dementia

Pain in older adults is very often undertreated, and it may be especially so in older adults with severe dementia. Changes in a patient's ability to communicate verbally present special challenges in treating pain, and unrelieved pain can have serious consequences, including declines in physical function and diminished appetite. The Pain Assessment in Advanced Dementia (PAINAD) scale has been designed to assess pain in this population by looking at five specific indicators: breathing, vocalization, facial expression, body language, and consolability. A trained nurse or other health care worker can use the scale in less than five minutes of observation. For an online video showing nurses using the PAINAD scale and other pain-assessment tools, go to http://links.lww.com/A251.     

Rehabilitation for older people with dementia

It should not be assumed that living with dementia means a complete loss of abilities. However, people with dementia are not always allowed to realise their full potential. The author suggests that person-centred rehabilitation with this patient group can enhance their abilities and help them to acquire new ones.     

Wandering behaviour in people with dementia

BACKGROUND: Wandering has been described as one of the most challenging behaviours to manage and yet a search of the literature in the last two decades yields only a limited number of papers that specifically studied wandering. AIM: This paper reviews the current literature on wandering in relation to the nature of the phenomenon, attempts to classify the behaviour, the extent of the problem, the profile of those who wander, postulations about its aetiology, and intervention strategies being employed. METHOD: Eight literature databases were searched for the last 40 years up to February 2003 using 'wandering' and 'dementia' as combined keywords. A total of 133 articles was included in the review. FINDINGS: The prevalence of wandering behaviour was difficult to assess and no conclusions could be reached. The typical wanderer depicted in the literature was relatively young in the older population, more cognitively impaired, more likely to be a man, might have experienced sleep problems, had a more active premorbid lifestyle, and used more psychotropic medications. While studies agreed that wanderers are more cognitively impaired, their findings did not necessarily agree on other attributes. Three major approaches, namely the biomedical, psychosocial and person-environment interaction perspectives, in conceptualizing wandering behaviour can be identified from the literature. Medications, activity programmes, behavioural modification and environmental manipulation have been used as interventions but none has so far demonstrated unequivocal effectiveness. CONCLUSION: Knowledge generated through research remains insufficient to explain fully why and when wandering occurs. Variability in how the phenomenon was defined and studied, and the small size of the samples made generalizability of findings difficult. Future research should incorporate a clearer definition of wandering; a specific targeted population with representative sample size; appropriate subject identification strategies; focussed interventions, and better control conditions.     

Using multi-sensory environments with older people with dementia

This paper examines the utilization of multi-sensory rooms as an adjunct to the care of older people with dementia. Their evolution into the field of dementia care is explored and analysed. The degree to which the aims of therapy can be realized is addressed in terms of process issues experienced whilst utilizing the therapy in practice. These are initiation of therapy, transfer of patients, selection of patients and resources. On the basis of these findings recommendations are offered, the focus of which is the active promotion of such therapy within the remit of trained nursing staff.     

Eating difficulty in older people with dementia

Difficulty with feeding is a common problem among people with dementia and may pose ethical problems for the care team if decisions about continued feeding arise. Thorough assessment can help with successful management and a team approach, with the full involvement of relatives, is advocated.     

Let's stand up for people with dementia

The care of patients with dementia was once seen as a limited career option but is now recognised as offering many challenges and rewards. Dementia can have a profound effect on patients and their carers. This article discusses the condition, the need for residential care and the importance of thorough assessment. The author also discusses how activities can help people with dementia to retain their cognitive function and how nurses can ensure the patient feels secure.     

Optimising nutrition for older people with dementia

This article explores interventions that can be undertaken to establish and maintain adequate nutritional intake in older people with dementia. This is often a problem, particularly in the later stages of the disease. A literature review was conducted, which identified 12 articles for inclusion. Most of these articles described interventions to maintain adequate nutritional intake in older adults with dementia. Although no standardised intervention was reported, some approaches did appear to be more successful than others. Further research is required on how nurses and nursing assistants can help older people with dementia to maintain adequate nutrition. Staff need more time and training to improve nutritional intake in this group of patients. In addition, enhanced vigilance with respect to eating difficulties and food consumption is necessary.     

Managing dysphagia in older people with dementia

In the UK there is an increasing ageing population, bringing with it a host of degenerative conditions such as dementia. Dementia is a common condition among older people. In the UK there are estimated to be over 750 000 people with dementia and numbers are expected to double in the next 30 years (Comas-Herrera et al, 2007). The term 'dementia' is used to describe a syndrome which may be caused by a number of illnesses and is associated with ongoing decline of the brain and its abilities. There are many types of dementia, the most common are Alzheimer's disease, vascular dementia and dementia with Lewy bodies. The most common form of dementia is Alzheimer's which accounts for 62% of all cases. Vascular dementia either alone or co-existent with Alzheimer's, is the second most common subtype of dementia (Knapp et al, 2007). Dementia is associated with complex needs especially in the later stages, and can have a devastating effect on the individual, their family and friends. The care needs often challenge the skills and capacity of carers especially when normal every-day activities decline. Food and drink are fundamental to living. Consequently observing individuals struggling with eating and drinking not only poses difficulties for professionals but also raises emotional issues for the individual and their family.     

Developing services for younger people with dementia

The services available for younger people with dementia (typically between 45 and 65 years of age) are underdeveloped. This article describes how one trust has addressed the problem through a 'coffee shop' project. This drop-in facility allows younger people with dementia and their carers to meet informally, support each other and access a range of services, such as counselling, medical information, help with benefits and legal advice.     

A therapeutic programme for people with dementia

Gibb H, Morris CT, Gleisberg J. International Journal of Nursing Practice 1997; 3 : 191–199
A therapeutic programme for people with dementia
A programme involving Tai Chi and structured reminiscence was trialed with nine people suffering from moderately advanced dementia. The analysis reported here aimed to examine stories the people told with a view to understanding the purpose of story telling in their lives. Themes derived from the narrative data had a strong evaluative quality, ranging from simple evocative expressions to more cognitive complex insights or treasures. The study indicated a major aim in story telling as being able to generate life values, both for the enrichment of identification of self, and to pass on or leave for today's youth. Findings here further substantiate Luke and Freiden's view that old age has its own cognitive and spiritual goals to achieve. There is strong evidence that people with moderate dementia still aim to participate in that endeavour.     

Older people with dementia in acute settings

This article suggests that screening and assessing for dementia can be incorporated into nurses' roles, as can a range of strategies to address some of the common challenges that nurses face when working with older people with cognitive impairment in acute settings.