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.

Unmet care needs are common among community-dwelling older people with memory problems in Finland.

Aims: Ageing in place has become a policy priority. Consequently, residential care has been reduced, and more older people with multiple care needs reside at home with the help of informal care and home care services. An increasing share of these people has memory disorders. We examined the extent to which memory problems, in addition to other individual characteristics, are associated with unmet care needs among community-dwelling older people. Methods: The study employed cross-sectional survey data from community-dwelling people aged 75+ collected in 2010 and 2015, analysed using binary logistic regression analysis. The study population consisted of people who had long-term illnesses or disabilities that limited their everyday activities (N = 1928). Nine per cent reported substantial memory problems. Of these, 35.7% had a proxy respondent. Results: People with memory problems have more care needs than those with other types of disability or illness. They receive more care but still have more unmet needs than others. About a quarter of people with memory problems reported that they did not receive enough help. This result did not change significantly when the proxy responses were excluded. Even a combination of informal and formal home care was insufficient to meet their needs. Conclusions: Insufficient care for people with memory problems implies a serious demand for further development of home care services. The care needs of this population are often complex. Unmet needs represent a serious risk to the well-being of people with memory disorders, and may also create an extensive burden on their informal caregivers.

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.