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.

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.

Poetry With People With Dementia: An Evaluation of a Two Year Project Engaging in Poetry Activities With Older People in Residential and Nursing Homes.

This paper is a summary of an evaluation of the first two years of a three year poetry project for older people with dementia. The project was set up with a poet in residence who mentored six poets to deliver poetry activities to older people and those with dementia in residential and care homes in Herefordshire. The project was developed and run by the Courtyards Hereford. The evaluation was undertake through the use of questionnaires that were given to staff and carers undertaking training workshops and the poets, staff and carers in the homes who facilitated the activities and finally by the residents who took part in the project. The main findings were that participants that responded to the questionnaire for staff and carers it had increased confidence and assisted them in gaining more knowledge about the residents, whilst for residents it had a number of positive effects including enhanced communication, increased self-esteem and enhanced self-worth whilst making them feel less isolated.

FITS into Practice: Translating Research into Practice in Reducing the Use of Anti-psychotic Medication for People with Dementia Living in Care Homes

Objectives: This paper reports on the acceptability and effectiveness of the FITS (Focussed Intervention Training and Support) into Practice Programme. This intervention was scaled up from an earlier cluster randomised-controlled trial that had proven successful in significantly decreasing antipsychotic prescribing in care homes. Method: An in depth 10-day education course in person-centred care was delivered over a three-month period, followed by six supervision sessions. Participants were care-home staff designated as Dementia Care Coaches (DCCs) responsible for implementing interventions in 1 or 2 care homes. The course and supervision was provided by educators called Dementia Practice Development Coaches (DPDCs). Effectiveness data included monitoring antipsychotic prescriptions, goal attainment, knowledge, attitudes and implementation questionnaires. Qualitative data included case studies and reflective journals to elucidate issues of implementation. Results: Of the 100 DCCs recruited, 66 DCCs completed the programme. Pre-post questionnaires demonstrated increased knowledge and confidence and improved attitudes to dementia. Twenty per cent of residents were prescribed antipsychotics at baseline which reduced to 14% (31% reduction) with additional dose reductions being reported alongside improved personalised goal attainment. Crucial for FITS into Practice to succeed was the allocation and protection of time for the DCC to attend training and supervision and to carry out implementation tasks in addition to their existing job role. Evaluation data showed that this was a substantial barrier to implementation in a small number of homes. Discussion and conclusions: The FITS into practice programme was well evaluated and resulted in reduction in inappropriate anti-psychotic prescribing. Revisions to the intervention are suggested to maximise successful implementation.

Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Using a whole person approach to support people with cancer: a longitudinal, mixed methods service evaluation

Introduction: Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this paper is to (1) evaluate short and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC); (2) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods: Longitudinal mixed-methods service evaluation (n=135). Data collected included health related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity - MYCaW); lifestyle behaviour (bespoke questionnaire) and participants’ experiences over 12 months post course. Results: Statistically and clinically significant improvements from baseline - 12 months in severity of MYCaW Concerns (n=64; p<0.000) and mean total HRQoL (n=66; p<0.000). The majority of MYCaW concerns were ‘psychological and emotional’ and about participants’ wellbeing. Spiritual, emotional and functional wellbeing contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. 3-6 months post-course was identified as the time when more support was most likely to be needed. Conclusions: Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behaviour change were also identified. These data then informed wider and more person-centred clinical provision to increase the maintenance of positive long-term behaviour changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed.

Sexual functioning in people with stable chronic diseases

Backgound - In developed countries people are living longer and the incidence of chronic disease is increasing. Chronic disease and its treatments can have a negative impact on sexual functioning and sexual satisfaction. Aim of study - To explore and to compare sexual function and sexual satisfaction in people with stable chronic diseases.

Characterisation of adventitious lung sounds in people with dementia

Introduction: Lower Respiratory Tract Infections (LRTIs) are highly prevalent in institutionalised people with dementia, constituting an important cause of morbidity and mortality. Computerised auscultation of Adventitious Lung Sounds (ALS) has shown to be objective and reliable to assess and monitor respiratory diseases, however its application in people with dementia is unknown. Aim: This study characterised ALS (crackles and wheezes) in institutionalised people with dementia. Methods: An exploratory descriptive study, including 6 long-term care institutions was conducted. The sample included a dementia group (DG) of 30 people with dementia and a match healthy group (HG) of 30 elderly people. Socio-demographic and anthropometric data, cognition, type and severity of dementia, cardio-respiratory parameters, balance, mobility and activities and participation were collected. Lung sounds were recorded with a digital stethoscope following Computerised Respiratory Sound Analysis (CORSA) guidelines. Crackles’ location, number (N), frequency (F), two-cycle duration (2CD), initial deflection width (IDW) and largest deflection width (LDW) and wheezes’ number (N), ratio (R) and frequency (F) were analysed per breathing phase. Statistical analyses were performed using PASW Statistics(v.19). Results: There were no significant differences between the two groups in relation to the mean N of crackles during inspiration and expiration in both trachea and thorax. DG trachea crackles had significant higher F during inspiration and lower IDW, 2CD and LDW during expiration when compared with HG. At the thorax, the LDW during inspiration was also significantly lower in the DG. A significant higher N of inspiratory wheezes was found in the HG. Both groups had a low ratio of high frequency wheezes. Conclusion: Computerised analyses of ALS informed on the respiratory system and function of people with dementia and elderly people. Hence, this could be the step towards prevention, early diagnosis and continuous monitoring of respiratory diseases in people with cognitive impairment.

Needs assessment of people with severe mental illnesses and their families in Azerbaijan

RESUMO: Os indivíduos com doença mental grave, assim como os seus familiares, podem ser caracterizados como uma população em que ocorre uma combinação complexa de necessidades médicas e psicossociais, nomeadamente a nível do diagnóstico e do acesso aos serviços de saúde mental. A avaliação de necessidades pode fornecer informações importantes para o desenvolvimento de intervenções eficazes, tanto a nível da população como a nível individual. Este estudo teve como objetivo determinar as diferentes necessidades reportadas pelos pacientes com doença mental grave e seus familiares , assim como investigar as possíveis relações entre o estado de necessidades e as variáveis sócio-demográficas e clínicas. Simultaneamente, o estudo teve como objetivo avaliar a sobrecarga familiar e a satisfação dos utentes com os serviços de saúde mental. Foi elaborado um estudo transversal, realizado numa amostra de conveniência de cinquenta díades de paciente/membro da família, seguidos em regime de ambulatório no Centro Nacional de Saúde Mental. Foram utilizados como instrumentos de avaliação um questionário sociodemográfico, a Escala Breve de Avaliação Psiquiátrica (BPRS), o questionário de Avaliação de Necessidades de Camberwell (CAN), o Questionário de Avaliação do Envolvimento (IEQ) e a Escala de Verona de Satisfação com os Serviços (VSSS). As mais frequentes necessidades não-satisfeitas foram o ‘sofrimento psicológico’, as ‘atividades sociais’ e os ‘benefícios sociais’. O estudo mostrou uma sobrecarga significativa nas famílias que cuidam de pessoas com doença mental grave, que se correlacionou com as suas opiniões sobre as necessidades dos pacientes e teve um impacto negativo sobre o bem-estar psicológico. Os três mais importantes predictores de sofrimento psíquico em familiares foram o sexo, a situação laboral e a relação com o paciente. A avaliação da satisfação com os serviços revelou a existência de um hiato significativo entre os serviços prestados e os serviços desejados, reportados pelos pacientes e seus familiares. A maioria dos participantes do estudo desejavam ter um trabalho protegido, ou receber ajuda para encontrar emprego. Os resultados deste estudo poderão ser usados para fins de planeamento desenvolvimento e avaliação de serviços de saúde mental no Azerbeijão. Algumas recomendações sobre a melhoria dos serviços de saúde mental para pacientes com doença mental grave e suas famílias são feitas na secção final do trabalho.----------ABSTRACT: Patients suffering from severe mental illness, in addition to their family members, may be characterized as a population with a complex combination of medical and psychosocial needs, which are under-recognized and under-addressed by mental health services. At the same time, needs assessment provides important information necessary for developing effective interventions at both population and individual level. The study was aimed to determine various needs perceived by patients with SMI and their family members, as well as to find out possible relations between the needs and socio-demographic and clinical variables. Similarly the study was intended to evaluate family burden and users’ satisfaction with services. This was a cross-sectional study conducted on a convenience sample. Fifty dyads of a patient and family member applying for out-patient services to the National Mental Health Centre participated in the study. Sociodemographic questionnaire, Brief Psychiatric Rating Scale, Camberwell Assessment of Need, Involvement Evaluation Questionnaire, and Verona Service Satisfaction Scale were used as assessment tools. The most prominent unmet needs reported by people with SMI and their relatives were psychological distress, social activities and welfare benefits. The study showed significant burden in families caring for people with SMI, which correlated with their views about patients’ needs and had a negative impact on the psychological well-being. The three most important predictors of psychological distress in family members were gender, employment status and relationship to patient. Evaluation of satisfaction with services pointed out the gap between provided and desired services reported by patients and their relatives. Most of study participants wished to have sheltered work, or receive help in finding employment. The results of this study may be used for the purposes of mental health service planning, development and evaluation in our country. Some recommendations on improvement of mental health services for patients with SMI and their families have been made in the conclusion.

Therapeutic riding : learning and recovery for people with disabilities

The purpose ofthis study was to explore the process oftherapeutic riding as an experiential and holistic approach to learning and recovery for people with disabilities as perceived by the providers oftherapeutic riding. To enhance the connection between theory and practice and to suggest future research, the researcher endeavoured to develop a theory that contributed to the knowledge base oftherapeutic riding, animal-assisted therapy and education, experiential education, and experiential therapy in addition to contributing to connections among them. This topic was investigated because ofthe lack ofresearch about the process of therapeutic riding, particularly from learning and a recovery perspective. Few studies have addressed how therapeutic riding outcomes are achieved or how the therapeutic riding process actually works. This study was identified as grounded theory using qualitative data through interviews and narrative reflections with therapeutic riding providers, a researcher's journal, field notes, and written documents. Grounded theory analysis was used to analyze the qualitative data. This consisted ofdoing open, axial, and selective coding. This study provided detailed descriptions ofthe research approach, researcher's involvement, participant and site selection, data collection and analysis, methodological assumptions and limitations, credibility established, and ethical considerations. The findings ofthe data analysis revealed the theme ofrelationships as central to the learning and recovery process oftherapeutic riding for people with disabilities. The significance ofthe team relationships, the horse and rider relationship, and the providers and rider relationship was found. The essential components ofthe learning and recovery process were presented in a diagram in the selective coding phase. Goals oftherapeutic riding included psycho-education; behavioural and social; physical; and equestrian. Parts ofthe process ofhow outcomes were achieved included motivation; "opens new doors;" risk; task analysis; control; communication; and environmental factors. Outcomes of therapeutic riding included independence and mobility; confidence; and transfer abilities or skills. The implications ofthese findings for theory, practice, and further research were also. explored.