Let us imagine John. John is an 85 year-old man. He is a former engineer who has been retired for 23 years. John has never been much of a people-person. The company of his wife, Millie, and his three children has more or less taken care of his social needs. In addition, his seven grandchildren have always been close to him, especially the oldest, Lisa, whom John has missed very much since she moved to the US.
When John was younger, he used to hike in Lapland with Millie every summer.
When the couple got older, the trails got shorter, and the hikes ended when John was 75. After that they satisfied their desire for nature by living in a summer cottage every year from May to October. John also loved all kinds of motors, and motorbikes were his passion. He owned several bikes and took long trips alone every summer until his eyesight prevented him from biking at the age of 70. However, John kept his bikes and spent a lot of time in the garage with them.
When John was 75 and the hiking stopped, there were some signs of John’s incipient memory disorder, but the couple managed fine alone until John was 83, and with the help of the home care service after that. John’s diagnosis was Alzheimer’s, and the disease had advanced so that John needed help in all his daily activities and Millie could not manage any longer, even with the home care service.
Millie had been John’s official family carer for several years. The municipality offered John a place in a sheltered home with round-the-clock care. The facility had just been converted from a nursing home to a sheltered home according to new national policies. Millie discussed this with John and they decided that they should see the place, although she was dubious about all care facilities since they had quite a negative reputation.
John and Millie visited the facility in advance and Millie was convinced that it was a good place for John. During the visit, John had one of his deeply disorientated moments so his opinion was not heard. Millie had had many conversations with John about moving, and she knew John was nervous about the strange people that would surround him. But Millie trusted that having his own room and privacy would eventually calm John down and she made the decision of the move together with the
individual care supporting John’s own functional abilities. John could participate in many kinds of activities if he wanted to and he could enjoy the privacy of his own room, too. Self-determination was the most commonly used word in the conversation, and Millie trusted that John could remain John, although living in a care facility. John moved in and Millie visited every day during lunch time to help John eat.
This imaginary story about John and Millie could be a true story from Finland today, and we will return to it in the end. The number of older couples where one is the other’s caregiver is growing, and frequently the caregiver is the woman (Tikkanen 2016). Older people are staying in their private homes in worse condition than before with help from the home care service (Ala-Nikkola 2003). This is partly due to national elderly policies, which have resulted in the closure of geriatric hospital wards, the conversion of nursing homes to sheltered homes and highlighting home and family care (Ala-Nikkola 2003; Anttonen 2009; Finlex 2012a). People also stay in private homes as long as they can because of their desire to manage on their own for as long as possible (Jolanki 2009a) and because care facilities have a poor reputation (Pirhonen et al. 2016).
The promise the manager gave to John and Millie is consistent with Finnish national policy and recommendations regarding the quality of elderly care (ETENE 2008; Finlex 2012a; 2014; Ministry of Social Affairs and Health 2008). Individuality and self-determination are widely accepted as the cornerstones of good care, which can be seen in the written care philosophies of elderly care facilities too. However, as both international (Eyers et al. 2012; Petriwskyj, Gibson & Webby 2014) and Finnish (Järnström 2011a; Lämsä 2013) research point out, the rhetoric may be at odds with reality in elderly care, giving rise to constant tension between the ideals of care and practice. There seems to be a gap between the two; we know how to give good care in theory, but the theory does not meet practice for one reason or another.
I started working on the missing link between theory and practice on Martha Nussbaum’s (2007; 2011) thoughts of capabilities being the cornerstone of dignified human life. Just as policies should actualize in practice, dignified life is not just a theoretical idea but it is also ordinary life. Care policies and national recommendations acknowledged good, dignified life at a universal level, but failed to acknowledge the people they were talking about. Marx’s and Engels’ (1978) critique against contemporary philosophers seemed plausible when transferred to this modern day dilemma. Marx and Engels accused philosophers “of representing not true requirements, but the requirements of truth; not the interests of the proletariat, but the interests of human nature, of man in general, who belongs to no
class, has no reality, who exists only in the misty realm of philosophical fantasy”
(Marx & Engels, 1978, p. 75). Older people in need of care did not exist in the misty realm of political fantasy but in concrete care facilities affected by diminishing functional abilities, scarce resourcing of care and other reminders of reality.
Therefore older people and their situation needed to be made visible so that care policies that can meet their needs could be developed.
A plausible way to make older people in care facilities visible can be found on Axel Honneth’s (2005) theory of the recognition of persons. According to Honneth (ibid.), individuals need to feel loved, appreciated, and respected in order to be fully recognized as persons. I transferred this idea to care surroundings and studied whether older people were recognized as persons in the way Honneth had stipulated.
Nussbaum’s ideas of capabilities and Honneth’s philosophy of recognition seemed to have a strong affinity – they both concerned the relation between human dignity and personhood. Nussbaum was interested in how individuals may perform their personhood through the choices available, while Honneth studied the social aspect of how persons become persons and maintain personhood during their lives.
Personhood seemed then to become the missing link between policies and practice.
I began to anticipate that “the misty realm of political fantasy” connected to older people’s ordinary lives through the philosophy of recognition.
Based on this theoretical background, the empirical task became to study how older people could maintain and perform their personhood while residing in care facilities. Capabilities, recognition, dignity, and good life intermingle with each other, and this dissertation presents one way to study these issues based on empirical research conducted in elderly care surroundings. The terminology regarding care for older persons is numerous and confusing, even in Finland. My research is not about long-term care since long-term care covers both home and institutional care. By definition institutional care covers care in geriatric hospitals, health centers, and traditional nursing homes, but many include sheltered housing with round-the-clock assistance to this definition, too. On the other hand, the idea of the latter has been to make round-the-clock care less institutional and more homelike, and therefore sheltered housing with round-the-clock assistance should be separated from institutional care. In this research I chose to use the term assisted living to refer to sheltered housing with round-the-clock assistance for clarity and to make international comparisons possible.
I will introduce the political and ethical frameworks for elderly care, the Finnish elderly care system, and the concept of person centered care in chapter 2. Chapter 3 concentrates on the concept of good life and introduces the question that is the
common thread through the dissertation: “What are older persons able to do and be while residing in assisted living?” (cf. Nussbaum 2007, p. 20). After this the specific research questions will be presented in chapter 4 and the methodology of the research and the research site in chapter 5. The research results will be presented in chapter 6 based on the four original articles enclosed in the dissertation. Each subsection 6.1–6.4 is based on an original article. The four constituents of good life in assisted living based on this research are autonomy (article 1), agency (article 2), recognition (article 3), and affiliation (article 4). Since most of the people residing in assisted living suffer from dementia illnesses (Noro & Alastalo 2014), subsection 6.5 presents a summary of dementia-related issues in relation to the findings. In chapter 7, a novel care philosophy will be sketched based on the results and a short conclusion will be presented in chapter 8.