The barriers & solutions to providing good quality palliative care in dementia in the GP practice

BACKGROUND: Dementia is a significant worldwide health issue, however, it is often insidious in onset and difficult to diagnose, therefore GPs have expressed a limited confidence in their diagnostic skills, extending into their prognostication of the disease. As a result diagnosing the terminal phase of dementia has been identified as a significant challenge to delivering effective palliative care. Therefore, identifying the challenges faced by the GPs in this field will help to guide their training and support, and as a result could assist in the provision of sustained and effective palliative care for their dementia patients.

Exploring the prevalence of and factors associated with pain: a cross-sectional study of community-dwelling people with dementia

Few pain studies have made community-dwelling people with dementia (PWD) their focus. The aim of this study was to determine the prevalence of pain among this patient population and to explore medication use. Moreover, we sought to investigate patient and caregiver variables associated with the presence of pain. Community-dwelling PWD and their caregivers were recruited between May 2009 and July 2012 from outpatient memory clinics in Northern Ireland to take part in a face-to-face structured interview with a researcher. Patients' cognitive status and presence of depression were established. A full medication history was taken. Both patients and caregivers were asked to rate patients' pain, at the time of the interview and on an average day, using a 7-point verbal descriptor scale. From the 206 patients who were eligible to take part, 75 patient-caregiver dyads participated in the study (participation rate = 36.4%). The majority of patients (92.0%) had dementia classed as mild or moderate. Pain was commonly reported among the sample, with 57.3% of patients and 70.7% of caregivers reporting patient pain on an average day. Significant differences were found between patients' and caregivers' reports of pain. Two-fifths of patients (40.0%) were prescribed analgesia. Antipsychotic, hypnotic and anxiolytic drug use was low, whereas antidepressant drugs were prescribed more commonly. Presence of pain was unaffected by dementia severity; however, the use of prescribed analgesic medication was a significant predictor of the presence of pain in these patients, whether reported by the patient or their caregiver 'right now' or 'on an average day' (P < 0.001). Patient and caregiver recruitment was challenging, and remains a barrier to research in this area in the future.

General practitioners’ perceptions of the barriers and solutions to good quality palliative care in dementia

The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs' perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public.

Designing for dementia : an assessment of the impact of the physical environment on wayfinding success for residents in long term care settings

It is acknowledged that one of the consequences of the ageing process is cognitive decline, which leads to an increase in the incidence of illnesses such as dementia. This has become ever more relevant due to the projected increase in the ageing demographic. Dementia affects visuo-spatial perception, causing difficulty with wayfinding, even during the early stages of the disease. The literature widely recognises the physical environment’s role in alleviating symptoms of dementia and improving quality of life for residents. It also identifies the lack of available housing options for older people with dementia and consequently the current stock is ill-equipped to provide adequate support.
Recent statistics indicate that 80% of those residing in nursing or residential care homes have some form of dementia or severe memory problems. The shift towards institutional care settings, the need for specialist support and care, places a greater impetus on the need for a person-centred approach to tackle issues related to wayfinding and dementia.
This thesis therefore aims to improve design for dementia in nursing and residential care settings in the context of Northern Ireland. This will be undertaken in order to provide a better understanding of how people with dementia experience the physical environment and to highlight features of the design that assist with wayfinding. Currently there are limited guidelines on design for dementia, meaning that many of these are theoretical, anecdotal and not definitive. Hence a greater verification to address the less recognised design issues is required. This is intended to ultimately improve quality of life, wellbeing, independence and uphold the dignity of people with dementia living in nursing or residential care homes.
The research design uses a mixed methods approach. A thorough preparation and consideration of ethical issues informed the methodology. The various facets were also trialled and piloted to identify any ethical, technological, methodological, data collection and analysis issues. The protocol was then amended to improve or resolve any of the aforementioned issues. Initially a questionnaire based on leading design recommendations was conducted with home managers. Semi-structured interviews were developed from this and conducted with staff and resident’s next of kin. An evidence-based approach was used to design a study which used ethnographic methods, including a wayfinding task. This followed a repeated measures design which would be used to actively engage residents with dementia in the research. Complementary to the wayfinding task, conversational and semi-structured interviews were used to promote dialogue and direct responses with the person with dementia. In addition to this, Space Syntax methodologies were used to examine the physical properties of the architectural layout. This was then cross-examined with interview responses and data from the wayfinding tasks.
A number of plan typologies were identified and were determined as synonymous with decision point types which needed to be made during the walks. The empirical work enabled the synthesis of environmental features which support wayfinding.
Results indicate that particular environmental features are associated with improved performance on the wayfinding tasks. By enhancing design for dementia, through identifying the attributes, challenges with wayfinding may be overcome and the benefits of the physical environment can be seen to promote wellbeing.
The implications of this work mean that the environmental features which have been highlighted from the project can be used to inform guidelines, thus adding to existing knowledge. Future work would involve the dissemination of this information and the potential for it to be made into design standards or regulations which champion design for dementia. These would increase awareness for designers and stakeholders undertaking new projects, extensions or refurbishments.
A person-centred, evidence-based design was emphasised throughout the project which guaranteed an in-depth study. There were limitations due to the available resources, time and funding. Future research would involve testing the identified environmental features within a specific environment to enable measured observation of improvements.

Thermal environments and comfort in dementia friendly dwellings

This study follows on from a research project that developed guidelines for the Universal Design (UD) of Dementia Friendly Dwellings for People with Dementia, their Families and Carers. Research findings point to the need for thermal environments that support people with dementia and do not provoke stress, agitation or anxiety. Using semi-structured interviews and qualitative analysis of people with dementia this paper aims to provide insight into the questions of appropriate thermal environments. The qualitative analysis is supported by example simulated indoor environment studies that investigate comfort in common thermal environment provision scenarios in the homes of people with dementia. This paper focuses on the thermal environment, its impact on people with dementia, its therapeutic value, and its role in encouraging engagement in every day activity.
Findings from the interviews emphasize that control over their own internal environment is a priority for people with dementia. A strong preference for naturally or passively conditioned environments over mechanical conditioning is evident. Preferences are expressed for naturally ventilated environments enabling occupant instigated air movement. Repeated emphasis is placed on familiar elements including the fire and hot water bottle. Little desire is expressed for information feedback or technological displays.

The Use of Touch Screen Technology by People with Dementia and Their Carers in Care Home Settings.

Dominic Upton, Jennifer Bray, Tim Jones and Penney Upton report on research that confirms that touchscreen devices can be of great benefit in engaging and supporting people with dementia.

Exploring and Improving Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage and pay for their own social care rather than receiving it directly from their Local Authority. Research suggests that direct payments can enable people with dementia to stay in their own home for longer, and experience greater choice, flexibility and an improved social life. However, uptake of direct payments is currently low. People living in rural communities may particularly benefit from the additional flexibility offered by direct payments; however they may face difficulties accessing appropriate services. The aim of Phase 1 of the research is to explore the reasons why people with dementia who live in rural communities do or do not gain access to direct payments. This will be achieved through analysis of direct payment uptake data, focus groups with social workers, examination of online discussions about direct payments, and interviews with people with dementia, carers and social workers. Findings will inform Phase 2 of the research: the building and pilot testing of an intervention which can be utilised in rural communities to maximise access to direct payments by people with dementia.

Exploring and Improving Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. The first objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. However it was found that many service users were daunted by the thought of managing their own social care budget. The second objective of the research was to design and pilot test an intervention aimed at increasing uptake of direct payments by people with dementia. This comprised a session delivered to a team of social workers, aimed at encouraging them to offer combined direct payments to service users as a potentially less daunting alternative to full direct payments. Combined direct payments enable service users to receive part of their social care budget as a direct payment while the remainder is retained and managed by the Local Authority. In order to evaluate the intervention direct payment uptake will be examined for the six-month period before and after the intervention session, and social workers in the intervention team will be interviewed about their experiences of offering combined direct payments to service users.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions regarding direct payments were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage their own social care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions regarding direct payments were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

How has the Personalisation of Social Care Impacted on Service Users with Dementia?

The personalisation agenda is a government initiative aimed at transforming adult social care through giving service users choice and control over the care they receive. A key part of this agenda is the provision of direct payments; cash payments made to individuals eligible for social care services which allow them to manage their own care. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However very few people with dementia currently access direct payments. The objective of this research was to explore the social care experiences of people with dementia in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers, and focus groups held with two community social work teams. It was found that direct payments tended to be seen as a fall-back option, for example as the only alternative to residential care, or as a solution to problems with traditional services. Direct payments appeared to afford particular benefits to people with dementia in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments. The second (ongoing) phase of this research comprises the design and pilot testing of an intervention aimed at improving access to direct payments by people with dementia.

Exploring Access to Direct Payments by People with Dementia Living in Rural Communities

Direct payments are cash payments made to individuals eligible for social care services which allow them to manage and pay for their own social care rather than receiving it directly from their Local Authority. Research suggests that direct payments can enable people with dementia to stay in their own home for longer and experience greater choice, flexibility and an improved social life. However uptake of direct payments is currently low, particularly amongst people with dementia. Those living in rural communities may experience additional barriers to direct payments, such as transport issues and difficulty recruiting carers. There is a lack of research to date in this area which addresses the factors of dementia, ageing and rurality in unison. Therefore the objective of this research was to explore the experiences of people with dementia living in rural communities, in relation to their access to and use of direct payments. 26 semi-structured interviews were conducted with people with dementia in receipt of social care services in the community, and their carers and social workers. Focus groups were carried out with two community social work teams, and existing online discussions about direct payments contributed to by social care staff, people with dementia and their carers were examined. It was found that direct payments tended to be seen as a fall back option, for example as the only alternative to residential care, or as a potential solution to problems experienced by existing social care service users. Direct payments appeared to afford particular benefits to people with dementia and to those living in rural communities in terms of flexibility, continuity of care and access to local facilities. It is therefore important that this group are enabled to access direct payments; ensuring direct payments are viewed as a positive option by all stakeholders is key to this.

The Development of Environmental Assessment Tools to Support the Creation of Dementia Friendly Care Environments: Innovative Practice

The need for more dementia friendly design in hospitals and other care settings is now widely acknowledged. Working with 26 NHS Trusts in England as part of a Department of Health commissioned programme, The King’s Fund developed a set of overarching design principles and an environmental assessment tool for hospital wards in 2012. Following requests from other sectors, additional tools were developed for hospitals, care homes, health centres and housing with care. The tools have proven to be effective in both disseminating the principles of dementia friendly design and in enabling the case to be made for improvements that have a positive effect on patient outcomes and staff morale. This paper reports on the development,use and review of the environmental assessment tools, including further work that is now being taken forward by The Association for Dementia Studies, University of Worcester.