Access to Care

In this section of the review you will any papers on the process and experience of accessing care. This includes papers from the perspective of the person with dementia and carers but also includes papers on issues affecting access such as policy and location.

Key stakeholders’ experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review

O’Shea, E., Timmons, S., O’Shea, E., Fox, S. and Irving, K.
BMC geriatrics
In this qualitative systematic review O'Shea et al. (2017) discuss five key conccepts in key stakeholders' experiences of respite; transitioning to service use, expanding organisational capacity, dementia care quality, bilding a collaborative partnership and dyad restoration.
They found broad agreement on the need to improve access to respite and to provide bettwe support during the transition. A lack of staff, resources and money were identified as barriers to the provision of quality care, with the need for better governance and training also highlighted. Organisational culture emerged as perhaps the most significant factor in terms of implementing a more person centred, responsive service. The authors argue that respite must provide restorative care for both the person with dementia and their caregiver and that this may require a reconceptualisation of the service. They recommend future research should explore alternative or modified models for this service.

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice.

Kerpershoek, L., de Vugt, M., Wolfs, C., Woods, B., Jelley, H., Orrell, M., Stephan, A., Bieber, A., Meyer, G., Selbaek, G. and Handels, R.
Aging & Mental Health
This paper is one of a number reporting on the Access to Timely Formal Care (Actifcare) study. It reports on the domains and levels of need among 451 community dwelling dyads of people with dementia and their caregiver.
The paper also discusses the relationship between needs and quality of life (QOL) from the perspective of the person with dementia and their caregiver. The greatest needs reported by people with dementia related to company, information and day time activities but overall they reported less unmet needs than their caregivers or the researchers, suggesting a significant difference in perspective. The authors suggest this may be linked to the person's efforts to remain autonomous resulting in an underplay of needs or it may be related to a lack of insignt on the part of the person with dementia. Most met needs are found to be met through informal care and the study found that as care needs increased there was a decrease in carer's QOL. The authors comment on the potential for differing perspectives among dyads to create conflict and the need for professionals to be trained in this area. They also sugest the identifed domains should be the primary focus for interventions aiming to improve quality of life.

The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study.

Leavey, G., Abbott, A., Watson, M., Todd, S., Coates, V., McIlfactrick, S., McCormack, B., Waterhouse-Bradley, B. and Curran, E
BMC health services research
The Northern Ireland Public Health Agency, the Royal College of GPs and a consortium of voluntary sector organisation and service users developed a Health Care Passport to be used by people with dementia and their informal carers.
This paper sets out the protocol to be used in evaluating whether the passport is acceptable and useful for this population. By adopting a qualitative longitudinal approach informed by critical realist review the authors argue they will facilitate a deeper evaluation of how it worked, for whom and in what context. Leavey et al. (2016) discuss the current barriers to holistic care for people with dementia and the pressure on family carers to meet the gaps in current service provision. They then describe how participants will be recruited and prepared for using the passport, the process of participant interview and passport content analysis. While acknowledging the potential benefits of the passport they point to the potential variables in its success or failure and to the essential nature of such an evaluation of the effectiveness of the passport across circumstances, time and a range of users.

Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries

Broda, A., Bieber, A., Meyer, G., Hopper, L., Joyce, R., Irving, K., Zanetti, O., Portolani, E., Kerpershoek, L., Verhey, F. and de Vugt, M.
BMC health services research
This paper by Boda et al. (2017) reports on a piece of work carried out as part of the Access to Timely Formal Care (ActifCare) project.
Interviews with policy makers and political decision makers were completed across eight countries to establish their perspectives on access to formal care for people with dementia and their carers. A key theme to emerge was the need for a co-ordination role to help people navigate the care system. Access to information was also identified as an essential precursor to accessing services. Experts were agreed that formal services should be person centred, tailored to individual needs and multidisciplinary. Public awareness was also identified with experts highlighting the need for educational and mass media campaigns targeting improved awareness and a reduction in stigma. The authors conclude that the experts are well acquainted with current discussions and approaches to improving dementia care.

Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study.

Kerpershoek, L., de Vugt, M., Wolfs, C., Jelley, H., Orrel, M., Woods, B., Stephan, A., Bieber, A., Meyer, G., Engedal, K. and Selbaek, G.
BMC health services research
Kerpershoek et al. (2016) detail the study protocol used in the access to timely formal dementia care in Europe (ACTIFCARE) project.
This European study included participants from eight countries, including Ireland, and focused on increasing understanding of why people in the middle stages of dementia and their informal covers use or fail to use formal care services. The paper details the measures being used to assess met and unmet needs, quality of life and the programme timetable. The authors highlight the potential for development of best practice care strategies to improve access to care across Europe.

Access to community care for people with dementia and their informal carers.

Bieber, A., Stephan, A., Verbeek, H., Verhey, F., Kerpershoek, L., Wolfs, C., de Vugt, M., Woods, R.T., Røsvik, J., Selbaek, G. and Sjölund, B.M.
Zeitschrift für Gerontologie und Geriatrie
This study used a case vignette approach to explore the structures and procedures associated with accessing formal dementia care across 8 European countries.
While existing research suggests dementia specific care services are crucial, the study found that typical pathways to care across participating countries are not dementia specific. Informal carers were found to drive help seeking on behalf of the person with dementia. G.P.s were identified as key across most countries but did not meet expectations and were found to lack knowledge on supports available. Memory clinics are part of dementia care structures across most countries but the authors point to conceptual differences and variance in usefulness depending on National Health systems. Finance is a factor in accessing formal care with Ireland identified as one of the countries where out of pocket expenditure is a serious barrier. For an example of best practice the authors point to Norway, where a multi professional team approach is combined with a key reference person.