The Covid-19 epidemic has most affected old people, not those who live at home – but those in old age homes. In Slovenia, as many as four-fifths of those deceased in the epidemic were residents of ...these institutions. The analysis shows that the essential moment of infection is institutionality, not age, that it is in this sense almost an institutional epidemic. The make-up of total institutions presents a significantly higher risk of transmission of infection – due to increased human concentration and increased frequency of contacts, but also because of the institutional structure and ethos, which objectify residents and deprive residents of the power of action. The deceased residents can be seen as (passive) victims not only of the virus, but also of the institutional nature of the organisation of care (prevailing in Slovenia). This was neglected in the debate so far, the measures introduced did not allow transfer to community care, which would provide residents with the level of safety comparable to the population at large, such services allowing a greater degree of self-isolation and control of contacts. The deceased residents are victims of a delay in deinstitutionalisation and in introduction of a potent, community based long-term care. These are the pressing tasks for the future, if we are to ensure at least safety for old people, and with it a life worth living.
Dementia – a reason for deinstitutionalisation
Dementia is often the ultimate argument for the need of institutions. However, dementia is not a "disease" that would need an institutional care, and ...institutions are not an environment of decisive advantage, and the placement in an institution is not the result of a "deterioration" of the state – it is a consequence of the discontinuity of the system, the lack of intensive services in the community, the "drama of institutionalisation" accompanied by reification of human beings and encouraged by the quest for profit. Quite the contrary, institutions can be described as a "machine of oblivion", a foundation of alienation, passivation and intensification of the very difficulties that are usually attributed to the disease process. On the basis of this critique, the author sketches specific elements of deinstitutionalisation in the case of dementia and proposes a heuristic theorem for the research and action in this field. The transition to the community means transforming the modelling of dementia, providing a safe space, adequate intensity of support, a conjunction of informal care and professional interventions, enabling alternative subjectivity and new solidarity. Research and action in the field of dementia should stem from the life-world of so labelled people, and transversely address the variety of plateaus of action. It should focus on the equally transversal phenomena of supplanting the loss of subjectivity and territorial insertion, while also addressing the more fundamental issues of the bifurcation of contemplative and action identity.
Dolgotrajna oskrba ni le reforma sistema, je tudi bistvena sprememba paradigme. Tako v socialni varnosti – v sistemu pravic in v načinu razmišljanja o upravičenosti, kakor tudi v samem delovanju – ...delu z ljudmi. Namen dolgotrajne oskrbe je trojni premik. 1. Univerzalnost dajatev in krepitev uporabnikov. 2. Integracija sistema in zveznost storitev. 3. Prehod od institucionalnega varstva k oskrbi v skupnosti. Cilji in smotri dolgotrajne oskrbe so postavljeni visoko – in tako je prav. Pomoč in podpora, ki jo nekdo prejema, ne sme biti razlog za dodatno stigmatizacijo in vstop v sistem mora ljudi, ki dajatve prejemajo, krepiti in jih ne sme postavljati v (ne)hvaležen položaj. Nov sistem mora integrirati socialne in zdravstvene ter tudi druge storitve v sebi lastno celoto, s svojo posebno notranjo logiko. Na vsakdanji ravni mora dolgotrajna oskrba biti pregledna, usklajena in pod nadzorom uporabnikov. Dolgotrajna oskrba mora uvesti »socialni model« oskrbe. To pa ne sme pomeniti prevlade ene stroke nad drugo. Mora pomeniti, da postavljamo človeka, njegov življenjski svet in njegove pravice v ospredje. Obstaja velika nevarnost, da bo nov zakon omejil storitve na dejavnost osebne oskrbe in zanemaril dejstvo, da je človek predvsem družbeno in družabno bitje in da je ena od osnovnih življenjskih dejavnosti (in ne opravil!) tudi vključevanje v družbo in aktivno delovanje v njej. Socialne storitve so v kvantiteti morda za večino uporabnikov manjši del oskrbe, a so na dolgi rok in z vidika vzpostavljanja človeka vrednega življenja verjetno najpomembnejše. Uvajanje dolgotrajne oskrbe mora dati prednost storitvam, ki se izvajajo v človekovem lastnem okolju. Dolgotrajna oskrba in deinstitucionalizacija sta dve plati iste medalje. Zakon in njegovo uveljavljanje morata nedvoumno, načrtno in odločno ukinjati institucionalno varstvo in ga nadomeščati s storitvami po osebni meri. Spodaj naštevamo nekatere pomembne vidike oz. načela, ki jih ob snovanju zakona in pri pripravi pilotiranja moramo upoštevati.
The Covid-19 epidemic has most affected old people, not those who live at home – but those in old age homes. In Slovenia, as many as four-fifths of those deceased in the epidemic were residents of ...these institutions. The analysis shows that the essential moment of infection is institutionality, not age, that it is in this sense almost an institutional epidemic. The make-up of total institutions presents a significantly higher risk of transmission of infection – due to increased human concentration and increased frequency of contacts, but also because of the institutional structure and ethos, which objectify residents and deprive residents of the power of action. The deceased residents can be seen as (passive) victims not only of the virus, but also of the institutional nature of the organisation of care (prevailing in Slovenia). This was neglected in the debate so far, the measures introduced did not allow transfer to community care, which would provide residents with the level of safety comparable to the population at large, such services allowing a greater degree of self-isolation and control of contacts. The deceased residents are victims of a delay in deinstitutionalisation and in introduction of a potent, community based long-term care. These are the pressing tasks for the future, if we are to ensure at least safety for old people, and with it a life worth living.
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