Experiences of people with memory disorders and their spouse carers on influencing formal care: "They ask my wife questions that they should ask me".

BACKGROUND: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. METHODS: Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. FINDINGS: Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers' decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. CONCLUSIONS: People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.

The Joint Impact of Age at Death and Dementia on Long-Term Care Use in the Last Years of Life: Changes From 1996 to 2013 in Finland.

Welfare states increasingly rely on aging in place policies and have cut back on institutional long-term care (LTC) provision. Simultaneously, the major determinants of LTC use, that is, dementia and living to very old age, are increasing. We investigated how increasing longevity and concomitant dementia were associated with changes in round-the-clock LTC use in the last 5 years of life between 1996 and 2013. Retrospective data drawn from national registers included all those who died aged 70+ in 2007 and 2013, plus a 40% random sample from 2001 (N = 86,554). A generalized estimating equations (GEE) were used to estimate the association of dementia and age with LTC use during three study periods 1996-2001, 2002-2007, and 2008-2013. Between the study periods, the total number of days spent in LTC increased by around 2 months. Higher ages at death and the increased number of persons with dementia contributed to this increase. The group of the most frequent LTC users, that is, people aged 90+ with or without dementia, grew the most in size, yet their LTC use decreased. The implications of very old age and concomitant dementia for care needs must be acknowledged to guarantee an adequate quantity and quality of care.

Overlaps and accumulation in the use of rehabilitation services.

The Finnish rehabilitation system is considered fragmented and multisectoral, and thus it may produce 'multiclients' receiving inefficient and overlapping services. This paper addresses the overlaps and accumulation in the delivery of rehabilitation services in Finnish rehabilitation subsystems. Data were drawn from several administrative registers on the use of rehabilitation services during the years 2004 and 2005 in one hospital district area in Midwest Finland. To analyze the differences in use of rehabilitation services between the patient groups, cross-tabulations, logistic and linear regressions were used. Altogether 15 189 persons in the study area used rehabilitation services during 2004 and 2005; 9% of rehabilitees used services provided by two or more subsystems. These multiclients used 25% of all rehabilitation services. Men of working ages and living in larger municipalities were more likely to be multiclients. The proportion of multiclients among all rehabilitees was smaller than expected. However, these multiclients used a larger proportion of rehabilitation services. In the case of multiclients, the problems most likely occur in the rehabilitation process, as the services provided by different subsystems most probably are not linked together. To improve the performance of the rehabilitation system, more attention should be paid to integrating the subsystems.