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This article reports the results of a socio-legal investigation into how continued work among people living with progressive cognitive impairments such as mild cognitive impairment (MCI) or early onset dementia (EOD) can be supported. This study that makes use of empirical data collected in Finland, Sweden and Canada seeks to give voice to people living with MCI or EOD and set their experiential knowledge in dialogue with equality rights related tools provided by the UN Convention on the Rights of the Persons with Disabilities (UNCRPD). The results illustrate that there are effective tools available that remove barriers to participation and support continued work of employees living with cognitive impairments at least for some time while impairments are mild. Ideally, flexibility and solidarity in the workplace automatically eliminates the effects of individual impairment. However, cognitive impairments are often such that along with general accessibility measures individual accommodations are needed. Supporting continued work expands the freedom to continue meaningful work in the preferred manner and offers people the means to gain a livelihood and participate in society as a member of the work community on equal basis with others.

Background: Exceptional circumstances such as the COVID-19 pandemic increase the risk for vulnerability among people living with dementia. Objective: This article discusses the well-being and rights of people living with dementia in Finland during the pandemic and analyses the legal framework covering the restrictions of their rights during that period. Methods: The empirical research comprises a survey of persons with dementia (n = 31) and their family members (n = 168). The participants completed a total of 13 survey items involving questions about their well-being during the pandemic, restrictions on freedom, access to services, information on pandemic regulations and guidelines as well as possible problems with authorities. The survey included both multiple choice and open-ended questions. Results: According to people with dementia and their family members, by spring 2021, the pandemic had reduced meaningful activities available to people living with dementia in Finland and decreased the number of meetings between them and other people. Many reported a decline in their physical and/or mental well-being or greater difficulty or delays in accessing social and health services. Over a third of respondents found that the right to meet people was restricted among people with dementia, and almost half of the respondents took the view that their freedom of movement was restricted. There were also major shortcomings in terms of information on restrictions. Conclusion: The results highlight the importance of bearing in mind the negative effects that restrictions on mobility, meeting other people and meaningful activities can have on the well-being of people living with dementia. This should be considered, for example, when reforming legislation.

Tämä artikkeli vastaa kysymykseen, miten yli 65-vuotiaiden kotona saattohoidossa olevien oikeus sosiaali- ja terveyspalveluihin toteutuu kuolevan, omaissaattajan ja läheisensä jo menettäneen surevan kokemuksina. Tutkimusaineisto muodostui 24 haastattelusta, jotka analysoitiin temaattisella sapluuna-analyysillä. Analyysistä muodostui kaksi pääluokkaa: positiiviset ja negatiiviset kokemukset palveluista. Tulosten mukaan positiiviset kokemukset olivat yhteydessä sosiaali- ja terveyspalvelujen saatavuuteen ja laatuun, hyvään kohteluun, kokonaisvaltaisen tuen saamiseen sekä informaatioon ja neuvontaan. Negatiiviset kokemukset puolestaan olivat yhteydessä viiveisiin tutkimusten ja hoidon aloittamisessa, huonoon kohteluun, kokonaisvaltaisen tuen puuttumiseen ja tiedon saantiin liittyviin ongelmiin. Tulosten perusteella voidaan todeta, että lain tarkoittama hyvä hoito on riippuvainen palvelujärjestelmän riittävyydestä ja toimivuudesta. Hoitohenkikökunnan osaaminen ja vuorovaikutustaidot vaikuttavat sekä kuolevan, omaissaattajan että läheisensä jo menettäneen surevan kokemuksiin heidän oikeuksiensa toteutumisesta.

Dementia is a progressive, irreversible neurological disorder that causes changes in cognitive function and behaviour. While at least 5% of people who develop dementia every year are under the age of 65, dementia in the workplace is currently not well recognised or supported. The changes associated with dementia present multiple challenges for individuals who wish to continue with their employment. Many lose their positions before receiving a diagnosis, whilst others take sick or disability leave or early retirement. The process of understanding what is happening and coping with this new situation is highly individualistic and involves several transitions. The MCI@work project is an international initiative taking place in Canada, Finland, and Sweden where we examine these transitions through the personal narratives of individuals who have either currently or recently gone through the experience of developing dementia whilst in the workforce. From these data, we have developed a framework for understanding the transitions experienced by people who develop dementia whilst in the workforce. The aim is to assist individuals and their employers to better understand the needs of people living and working dementia as well as engage in appropriate actions that support choices and dignified transitions either within the context of employment or out of the workforce.

Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD in the workplace has had very little attention. This paper presents a two-part study involving interviews and participatory sessions to begin to understand the workplace experiences and the role of technology among people living with MCI/EOD. We present our findings from working with seven people with MCI/EOD and two care partners to explore technology design. Our results indicate several similarities as well as a few differences between MCI/EOD and later-onset dementia with respect to challenges using technology and design considerations for supporting engagement and use of technology. Lessons learned through the process of working with people with MCI/EOD through participatory methods is presented along with recommendations to foster an inclusive, respectful, and empowering experience for participants with MCI/EOD. Funding Agencies|JTC 2017 as part of the Joint Programming Initiative (JPI) "More Years, Better Lives" (JPI MYBL) initiative; J-Age II - Horizon 2020, the EU Framework Program for Research and Innovation [643850]

Background Striving to cope with day-to-day challenges is a basic human behaviour. Self-initiated management approaches provide a resource that has yet to be discovered and systematically used in occupational therapy practice. This resource might be especially important for people with dementia who are less likely to adopt management approaches initiated by others. Aims/objectives Based on the findings of former studies on management and problem-solving actions among people with cognitive impairment, this article aims to identify and categorize the study participants self-initiated management approaches and how these may be manifested in strategies in everyday occupations. Material and methods The study utilized a form of meta-synthesis; an aggregated analysis, where findings from 11 studies published 2004-2020 were compared and categorized, incorporating the views of participants with dementia/mild cognitive impairment, or acquired brain injury. Results Thirty strategies were identified and grouped into seven categories of management approaches, used in a variety of everyday occupations and situations. A majority of the strategies were found in both populations, suggesting that management approaches are more similar than different across populations with cognitive impairment. Conclusions and significance Attending to the rich variation of self-initiated management approaches/strategies among persons with cognitive impairment offers possibilities for developing occupational therapy interventions. Funding Agencies|FORTE; Swedish Council for Health, Working Life, and Welfare [2013-2104, 2017-02303]; CIHR; Canadian Institute of Health ResearchCanadian Institutes of Health Research (CIHR) [MYB:155863]; Academy of FinlandAcademy of FinlandEuropean Commission [318848, 314749]

Tammikuussa 2019 erityisesti yksityisissä ympärivuorokautista hoitoa antavissa, ns. tehostetun palveluasumisen yksiköissä havaittiin runsaasti epäkohtia. Myöhemmin epäkohtia tuli esille myös julkisesti tuotetuissa yksiköissä. Tarkastelemme tässä artikkelissa vanhuspalvelujen laatua ja laadun valvontaa koskevaa sääntelyä. Lainopilliseen tarkasteluun yhdistämme aluehallintovirastosta saatuja tietoja vanhuspalvelujen valvonnan määrästä ja laadusta. Lainsäädännön palvelulupauksen mukaan annetun sosiaalihuollon tulee olla laadultaan hyvää. Laatua on lainsäädännössä, sen esitöissä ja ohjeissa määritelty, mutta laadun mittaaminen ilman kunnollisia indikaattoreita on haastavaa. Tämä johtaa ongelmiin myös valvonnassa. Esitämmekin, että laadun valvonta kaipaa tarkempia indikaattoreita. Myös valvontavastuuta ja sen toteuttamista koskevaa sääntelyä tulisi täsmentää.

Hautatahdossa on lain mukaan kyse vainajan autonomian ja katsomusten kunnioittamisesta. Tämä artikkeli analysoi läheisensä menettäneiden kertomuksia hautatahdosta ja siitä, miten he ovat pyrkineet huomioimaan vainajan tahdon hautajaisten suunnittelussa ja hautauspaikan valinnassa. Artikkelin aineisto muodostuu kolmentoista surevan läheisen haastatteluista, jotka on analysoitu temaattisella sapluuna-analyysillä. Tulokset osoittavat, että osassa tapauksista vainaja oli selkeästi ilmaissut toiveensa hautaussuunnitelmista, mutta osassa tapauksista kyse oli oletetun hautatahdon ilmaisuista. Katsomukset vaikuttivat vainajan hautatoiveisiin erityisesti silloin kun hänellä oli ollut selvä uskonnollinen tai ei-uskonnollinen vakaumus. Vainajan, surevan läheisen ja muiden läheisten relaatioilla oli iso merkitys vainajan hautatahdon seuraamisessa. Tutkimuksemme osoitti, että uusperhetilanne hankaloitti vainajan hautatahdon noudattamista erityisesti niissä tilanteissa, joissa läheisillä oli erilaisia tulkintoja vainajan toiveista. Mitä selvemmin vainaja on ilmaissut toiveensa hautausrituaalista, hautatavasta ja hautapaikasta läheisilleen, sitä helpompi hautajaiset on järjestää. Tämä säästää läheisiä turhilta riidoilta ja mielipahalta.

Aim To synthesize what is known about elder abuse and relationship factors associated with abuse between caregivers and older people with memory disorders at home. Background Concerns about abuse in the caring relationship between older people with memory disorders and family caregivers have increased. Abuse is associated with negative outcomes on older people's health, quality of life, and zest for life. Abuse in the caring relationship manifests in financial exploitation, neglect, mistreatment, and physical issues. Design Systematic review. Data Sources Databases including Scopus, PubMed/Medline, SveMed+, Cinalh, SonINDEX, and ProQuest were searched using keywords about abuse in the caring relationship between older people with memory disorders and family caregivers at home. Articles published between 2005–2019 were retrieved and underwent data analysis and knowledge synthesis. Review Methods The review was presented under the categories of the dyadic approach of elder abuse in connection with the role of caregiver (risk) and care recipient (vulnerability) by Fulmer et al. (2005). Results The search process led to 12 quantitative studies, including an intervention, a prospective, nine surveys, and a cross‐sectional structural interview. Findings were synthesized and presented under ‘personal’, ‘physical and psychological’, and ‘social’ domains indicating the bilateral roles of caregiver and care recipient leading to abuse. Conclusion This review depicted factors influencing abuse in the caring relationship between older people with memory disorders and their family caregivers at home. They included family caregivers’ psychological issues, knowledge of memory disorders and modifications, previous caring relationship, social support, number of care recipients, and care recipients’ functional level. Impact This review identifies what influences elder abuse by family caregivers using the dyadic approach and explains how abuse can be prevented through suggested strategies. The review findings are relevant to multidisciplinary healthcare providers and can guide the provision of support, screening and assessment, educational programs, and legislative initiatives. Paid Open Access

In common with other European countries, Finland faces multiple challenges in providing its ageing population with adequate, sustainable and rights-friendly services. This contribution focuses on long-term elderly care from the perspective of family law and solidarity among family members. The contribution explains the legal basis for the right to care at national level, the most important care models used, how care is paid for, as well as noting the main problems and challenges faced within the current system. We also assess the ways in which the funding basis of long-term care could be broadened in future in the event of older people’s own property being used to a greater extent in funding care expenses, and discuss the pros and cons of this approach. Finally, the contribution notes the ongoing but subtle development of Finnish legislation towards greater emphasis on home care and individual networks of people in need of care—the ‘family presumption’ that inevitably leads to family members playing an increasing role in elderly care.

Ikääntyvien kuljettajien määrän lisääntyessä myös muistisairaiden ihmisten osuus ajokortin haltijoissa kasvaa. Artikkelissa tarkastellaan etenevää muistisairautta sairastavan ihmisen ajo-oikeutta hyödyntäen lainopin menetelmiä. Vaikka muistisairaus johtaa edetessään ajokortista luopumiseen, ei pelkkä diagnoosi sairauden lievässä vaiheessa tarkoita ajoluvan menettämistä kaikissa ajokorttiryhmissä. Onnettomuusriski kasvaa sairauden edetessä, mutta yksilölliset erot voivat olla merkittäviä, ja ajokyvyn arvioinnissa tulee kiinnittää huomiota muistisairaan kokonaistilanteeseen. Oikeus ajoneuvon kuljettamiseen on usein keskeinen osa sairastuneen identiteettiä ja osa hänen autonomiansa toteutumista. Ajo-oikeuden poistaminen voi kuitenkin olla välttämätöntä paitsi sairastuneen itsensä suojaamiseksi myös muiden turvallisuuden takaamiseksi. Artikkelin lopuksi pohditaan ratkaisuja muistisairaan ihmisen liikkumisen turvaamiseksi. Tutustuminen vaihtoehtoisiin ja turvallisiin liikkumisen keinoihin tulisi aloittaa riittävän ajoissa. Rajoitetun ajo-oikeuden mahdollisuutta tulisi edelleen maassamme selvittää erityisesti syrjäseuduilla asuvien varhaisvaiheen muistisairaiden näkökulmasta. Lisäksi muistisairaille ihmisille tulee taata muiden sairaus- ja vammaryhmien tavoin yhdenvertainen oikeus vammaispalvelulain nojalla myönnettäviin kuljetuspalveluihin. People with dementia in traffic As the number of older drivers increases, so too does the number of people with dementia who hold driving licences. In the course of the disease’s progress, the capacity to drive diminishes and is at some point inevitably lost. This article examines how dementia affects an individual’s driving ability and how elderly people and people with dementia are taken into account in the legislation governing driving licences. The article also assesses the issue of the autonomy enjoyed by a driver and the importance of a driving licence for people with dementia. Finally, the article offers solutions aimed at safeguarding the right to liberty of movement and transportation for people with dementia so that they can live independently and participate fully in all aspects of life. People with dementia should be treated in the same way as those who have other types of illness and those who fall within other disability groups and be guaranteed equal access to transport services under the Disability Services Act.

Muistisairaus vaikuttaa sitä sairastavan ihmisen ja hänen läheistensä hyvinvointiin ja elämänlaatuun. Kognitiivisten kykyjen heikentyminen ja sosiaalisissa suhteissa tapahtuvat muutokset aiheuttavat haavoittuvuutta. Yksilöllisen tuen, laadukkaiden palvelujen ja hyvän hoivan perustana on haavoittuvuuden ymmärtäminen ja kohtaaminen. Muistisairautta sairastavan ihmisen mielen hyvinvoinnin vahvistamisen tulee olla tavoitteena tuen, palvelujen ja hoivan käytännöissä. Ammattihenkilöstöllä on keskeinen rooli mielen hyvinvoinnin edellytysten tunnistamisessa sekä niiden toteutumisessa. Tarkastelemme tässä artikkelissa muistisairaan ihmisen mielen hyvinvointia ja sen edellytysten turvaamista psykologisesta, eettisestä ja oikeudellisesta näkökulmasta. Nostamme esiin neuvonnan ja ohjauksen keskeisenä tukimuotona ja kuntoutukseen kuuluvana keinona ja pohdimme sen keskeistä merkitystä muistisairaan ihmisen mielen hyvinvoinnin vahvistamisessa. The preconditions of psychological wellbeing in persons with dementia - How to secure the right of their implementation? Memory illnesses affect the wellbeing and quality of life of the afflicted persons and their significant others. The deterioration of cognitive capacities and changes in social relationships are a cause for vulnerability. Understanding and encountering vulnerability form the basis of individual support and high quality services and care. The promotion of the psychological wellbeing of persons with dementia should be the focus in the practice of care, support and services. The professionals have a key role in the recognition and implementation of the preconditions of psychological wellbeing. In this article we investigate the psychological wellbeing of persons with dementia from psychological, ethical and judicial perspectives. We present guidance and counselling as key means of support and rehabilitation. We also observe the significance of counselling for the promotion of psychological wellbeing of persons with dementia.

ispartof: The Lancet Neurology vol:18 issue:2 pages:135-136 ispartof: location:England status: published

Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We formed a multi-disciplinary team to develop best practices for consent in data-intensive dementia research. We recommend that consent processes for research and data sharing support decision-making by persons with dementia, protect them from exploitation, and promote the common good. Broad consent designed to endure beyond a loss of capacity and combined with ongoing oversight can best achieve these goals. Persons with dementia should be supported to make decisions and enabled to express their will and preferences about participation in advance of a loss of capacity. Regulatory frameworks should clarify who can act as a representative for research decisions. By promoting harmonization of consent practices across institutions, sectors, and countries, we hope to facilitate data sharing to accelerate progress in dementia research, care, and prevention. ispartof: ALZHEIMERS & DEMENTIA vol:14 issue:10 pages:1334-1343 ispartof: location:United States status: published

As dementia progresses, it weakens a person’s legal capacity. Both legal and medical aspects are closely intertwined in the assessment of legal capacity. It is a legal problem whose solution requires medical expertise and a medical point of view. It is essential for lawyers to have basic knowledge about the effects of dementing illnesses in order to properly understand medical evidence presented in a case. For a physician it is necessary to have knowledge about different kinds of legal capacities and the complexity of legal assessment.

The rights of older people to care have become a major political and legal issue with the ageing populations of many European and OECD countries. Finland is an interesting case in this respect because in 2013, extensive new legislation was passed there concerning the rights of the older population to access care services. This article describes the context in which the ‘Act on Supporting the Functional Capacity of the Older Population and on Social and Health Services for Older Persons’ (980/2012 Elderly Care Act) was drafted, and what the Act aims to accomplish. It argues that while the Act is ambitious and symbolically significant, it remains unsatisfactory in practice. This is the case especially for people with dementia, who end up being disadvantaged. We compare the Elderly Care Act with other relevant legislation, in particular legislation pertaining to disability services, and estimate the significance of the law from the perspective of older people with dementia. We also discuss the situation in Finland in relation to the global situation of people with dementia as the UN Convention on the Rights of Persons with Disabilities was recently ratified in Finland. We show that disability legislation, rather than elderly care legislation, should be the framework through which the right to services should be secured for people with dementia., final draft, peerReviewed

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer's disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of attorney, as well as discussions about these issues -- and the need for them -- with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish.