A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care.

OBJECTIVES: A comorbid diagnosis of cancer and dementia (cancer-dementia) may have unique implications for patient cancer-related experience. The objectives were to estimate prevalence of cancer-dementia and related experiences of people with dementia, their carers and cancer clinicians including cancer screening, diagnosis, treatment and palliative care. METHOD: Databases were searched (CINAHL, Psychinfo, Medline, Embase, BNI) using key terms such as dementia, cancer and experience. Inclusion criteria were as follows: (a) English language, (b) published any time until early 2016, (c) diagnosis of cancer-dementia and (d) original articles that assessed prevalence and/or cancer-related experiences including screening, cancer treatment and survival. Due to variations in study design and outcomes, study data were synthesised narratively. RESULTS: Forty-seven studies were included in the review with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studies reported varied cancer-dementia prevalence rates (range 0.2%-45.6%); the others reported reduced likelihood of receiving: cancer screening, cancer staging information, cancer treatment with curative intent and pain management, compared to those with cancer only. The findings indicate poorer cancer-related clinical outcomes including late diagnosis and higher mortality rates in those with cancer-dementia despite greater health service use. CONCLUSIONS: There is a dearth of good-quality evidence investigating the cancer-dementia prevalence and its implications for successful cancer treatment. Findings suggest that dementia is associated with poorer cancer outcomes although the reasons for this are not yet clear. Further research is needed to better understand the impact of cancer-dementia and enable patients, carers and clinicians to make informed cancer-related decisions.

REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial.

OBJECTIVES: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care. DESIGN: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point). SETTING: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings. PARTICIPANTS: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study. INTERVENTIONS: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group. MAIN OUTCOME MEASURES: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties. RESULTS: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed. CONCLUSIONS: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions. TRIAL REGISTRATION: Current Controlled Trials ISRCTN42430123. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 16, No. 48. See the HTA programme website for further project information.

'It's easier just to separate them': practice constructions in the mental health care and support of younger people with dementia and their families.

There is no standard model of specialist care for younger people with dementia (onset before the age of 65 years) and specialist service provision varies widely throughout the UK. In order to gain a clearer picture about ways in which clinical staff work with younger people with dementia, semi-structured interviews were conducted with dementia care staff working in the north-west of England. Interviews focused on exploring daily working practices and the meaning placed on clinical decision making when involving family/carers in routine practice. Content analysis generated three core themes: (1) Maintaining Separation: how clinical staff conceptualize the meaning of 'family' in the provision of dementia care services; (2) Providing Practical Help: the focus in care provision on assisting families with aspects of daily life such as finances, education and physical care; and (3) Acknowledging the Family Context: how staff understand and interact with family members in an attempt to initiate care, utilizing biographically informed practice. By understanding how staff view their role in providing younger people with dementia with effective, high-quality dementia care, it is anticipated that a more family-centred approach can be integrated into already established patterns of working that more holistically meet the needs of this group.

Psychotropic PRN use among older people's inpatient mental health services.

Concerns have been expressed about the use of antipsychotics with older people, particularly in those who have dementia. Pro re nata (PRN) psychotropic medications including antipsychotics are commonly used to manage disturbed and distressed behaviour. This audit aimed to understand the use of PRN psychotropic medications in older people's inpatient mental health services and the quality of prescriptions and nursing documentation associated with this. A retrospective audit was undertaken on 154 patients on 11 wards in three Mental Health Trusts in the North West of England. A proforma adapted from previous research was used to collect data. Eighty-seven patients were prescribed combinations of 14 psychotropic drugs in 145 different prescriptions as PRN. Seventy-six doses of PRN were administered to 26 patients (range 1-17 doses). The most commonly administered drug was Lorazepam (n = 28, 36.8%). Drugs were most frequently administered during the night (n = 33, 43.4%). The majority of administrations of PRN were not documented (n = 45, 59.2%). PRN appeared to be used differently (smaller doses and less frequently) in this study compared to previous research of those aged under 65. Further work needs to examine the use of the use of PRN psychotropic medicines and the older person, and focus on developing alternative nonpharmacological interventions.

Medicine use in older people's inpatient mental health services.

The aims of this audit were to establish the range and volumes of medicines used in older people's mental health settings and to explore the safety of the prescribing habits through the application of the revised Beers criteria. An audit of all patients on all selected wards (both functional and organic) for current prescriptions of all drugs routinely prescribed on the census day was undertaken on 11 wards in three Mental Health NHS Trusts in the North West of England. Data were collected on 154 patients in 11 different inpatient settings in three Mental Health Trusts. A total of 153 patients had 882 prescriptions of 196 drugs (mean 5.8 drugs). Most frequently prescribed drugs were aspirin (n= 57, 6.5%), paracetamol (n= 36, 4.1%) and quetiapine (n= 35, 4.0%). Nine of the 48 potentially inappropriate medicines in the revised Beers criteria had been prescribed, although at within appropriate limits. The audit highlights the complexity of poly-pharmacotherapy in older adults admitted to mental health services. Further works needs to establish whether nurses have the clinical knowledge and skills to ensure safe practice. There appears to be continued variation in prescribing practice.

Supporting families over the life course: mapping temporality.

BACKGROUND: The present paper addresses a rather neglected dimension of family caregiving, its temporality. Many accounts of caregiving assume a state of stasis, and therefore, overlook factors which shape the evolving experience of family caregiving over the life course. METHODS: The paper begins by offering some reflections on theoretical and methodological issues identified by life-course researchers. RESULTS: Based both on theoretical propositions and a growing body of empirical evidence, this paper offers a heuristic for thinking about caregiving stages applied to families supporting people with intellectual disability. CONCLUSIONS: This heuristic is used to suggest further avenues of research and development.

The DIAL-log study. 2: Support in the early stages of dementia.

In the previous article (Vol 8(6): 387-93) the background information and study aims/limitations of the Dementia Information and Advice Lines (DIAL-log) project were outlined. This article introduces the main findings of the project and suggests that the transition into dementia is experienced through rising degrees of uncertainty and anxiety. People with the early experience of dementia also requested strategies for coping with memory loss and uncertainty over the meaning and purpose of memory testing. Building on the main findings of the project, the article concludes with a five-stage framework to help shape future research and service support.

The DIAL-log study 1: Profiling the experience of people with dementia.

Between July 1996 and December 1997 telephone helpline staff from the Alzheimer's Disease Society (ADS) in London, and six participating ADS regions in England and one in Northern Ireland, documented calls from people with dementia who contacted the service. Each call was recorded as soon as practicable after its completion on a Dementia Information and Advice Line (DIAL) log form (DIAL-log). Sixty-four calls were recorded in this way and 62 completed DIAL-logs were included in the study findings. Analysis of the data was undertaken via SPSS 6.1 for Windows. This article, the first of two, introduces the background to the study and notes that callers reported memory loss and forgetfulness as the most frequently noticed first signs of dementia. The study aims and limitations are also outlined in this first article. The second article will detail the main findings and the challenges that the DIAL-log study may provide for future dementia care practice and research.

The concept of serious mental illness: modern myths and grim realities.

Current mental health practice and legislation is influenced significantly by the ill-defined concept of serious mental illness (SMI). Although the concept of SMI originally appeared to include a consideration of a range of forms of mental illness, including dementias, by custom and practice the term has come to mean, often, only people with a psychotic diagnosis. This paper reviews the influence of the term SMI, considering the way older people, younger people and other subgroups within the 'adult' population have been marginalized by the narrow definition of the concept. The paper concludes with a consideration of some of the ethical implications of mental health nurses focusing on an ill-defined 'illness' grouping, and the impact that such a narrow focus might have on the ambition to establish 'health for all by the year 2000'.

Rewards and gratifications among family caregivers: towards a refined model of caring and coping.

Supplemented by a case illustration, findings from a study in Wales are reported for the first time from the application of two new instruments for measuring rewards and stresses among family caregivers. The paper takes as its starting point a critique of models of caregiving which emphasize instrumental and pathological dimensions. Findings suggest that caregivers report the existence of pervasive rewards and gratifications, as well as stresses, as part of the caregiving experience, and that these stem from varying sources. The role of rewards and satisfactions in stress-coping models is briefly discussed, and implications for changed practice and policy thinking are reviewed.

The biology of dementia due to Parkinson's disease.

This article is one of a series focusing on dementias due to an underlying biological factor. The reader should refer to the previous articles in the series (Delieu and Keady, 1996a,b). This article focuses on the normal structures within the brain which are involved in motor control and describes what occurs when this system is disrupted by an inappropriate reduction in the neurotransmitter dopamine. In time, this reduction in dopamine may have deleterious effects on other neuronal systems within the central nervous system, namely the diminished acetylcholine neurones which may lead to a dementional state. Possible causes of Parkinson's disease are discussed and some treatments briefly outlined.

Dementia: a matter of concern.

At RCN Congress in May, the Mental Health and Older People Forum opened a discussion on how the definition of 'serious and enduring mental health needs' affects services to people with dementia. Forum Chair John Keady highlights some of the issues presented.