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.

Earlier studies show that experiencing life as meaningful in old age promotes holistic wellbeing and health among older people. As more and more people are living with reduced capacities in their own homes, there is an urgent need to find new ways of promoting holistic wellbeing of the ageing population. Analysing data gathered from existential discussion groups on Service TV (STV), we show how strongly relationality and meaning in life are intertwined for older people. Our findings indicate that respect and support for the autonomy of older people is very important: in order to continue living at home, and prepare for a future with reduced capacities, they need family members for support. Autonomy of ageing becomes relational as choices and wishes are negotiated with family members. Relationships also contribute to loss of meaning. When older people felt that they were not close enough to their family, longed for friends of the same age, were bereaved or widowed, the relational gap caused a violation of meaning. In contrast, participation and activities with peers brought deep joy and connectedness to the lives of the participants. STV provided a new channel for participants to find and form meaningful relationships. Therefore, it is concluded that relationality can be supported by technological means of care.

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.

Having opportunities to make decisions and choices regarding one's life is crucial when living with dementia. This inter-disciplinary study draws on the concept of relational autonomy to explore how working-age people living dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life. The data consist of three focus group discussions conducted with 12 retired adults who developed dementia while still employed. The results illuminate various resources that enable a person to (a) handle their difficulties at work and related consequences with dignity, (b) manage everyday tasks and live a fulfilling life, and (c) fight the stigma associated with (working-age) dementia. Challenges related to these aspects reported by the participants reveal gaps and obstacles that impede the full realisation of the rights of people living with early onset dementia. This research highlights the need for workplace education for different stakeholders, equal and ongoing access to guidance and counselling for younger people who live with dementia, and an effort by society as a whole to eradicate stigma.

This article examines the counselling of people with dementia in legal matters by focusing on the experiences both of people with dementia and of social and health care professionals. The article also assesses the role of social and health care professionals in enabling the fulfilment of the legal security of people with dementia. In Finland, social and health care professionals have a responsibility to inform their clients of their social and legal security options, and therefore need to know the range of legal tools and options available. They also need to know what measures may be taken to support the remaining legal capacity and autonomy of the person with dementia and to facilitate choices and planning for the future. This article reports the findings of three separate studies carried out in Finland. By examining the results of these studies, the necessity of offering sufficient counselling and support can be addressed. Developing counselling involves changed attitudes and improved competence for the professionals involved in social and health care, as well as changes in operational practices. People with dementia constitute a large client group whose legal security should be developed in a comprehensive and nuanced way.

No abstract

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.

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. 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.