Formal care for persons with dementia in Norway

Due to the complex needs of persons with dementia and their informal caregivers, an extensive amount of care and support measures has been initiated. As an example, Table 3 is a survey of available support measures for persons with dementia living in the municipality of Bergen. Most of these services are exclusively for persons with dementia, or suspected dementia, and their caregivers. Other general support

measures, such as care payment (NO: omsorgsstønad), an accompanying certificate, a taxi free-card, assistive technology and the like are not included in the table. Until 2019, of the measures in the table, only nursing homes and homecare were legally required, with daycare being added from January 2020 (Health and Care Services Act, 2011).

In general, daycare centers for persons with dementia are well established in

Norwegian municipalities. Studies of their effect are few, but qualitative evaluations have shown that they provide meaningful activities, a sense of belonging and improved quality of life for the persons with dementia as well as respite for their informal caregivers (Soderhamn et al., 2014; Strandenæset al., 2018; Tretteteig et al., 2017). In addition to traditional daycare, alternative variants, such as daycare on farms, where farmwork is integrated in the activities, has become popular and has shown promising results (de Bruin et al., 2010; Ibsen et al., 2020).

Table 3. Measures for persons with dementia and their formal and informal caregivers in the municipality of Bergen. Support measureDescriptionProvider Pre-diagnosticMemory teams Interdisciplinary team–home visits for health interviews, initial testing of cognitive- and ADL- function. Reports to GP for further follow-up. Municipality Daycare Traditional daycare centers for persons with dementia From around 9 PM to 2 AM. 1-5 days a week. Participants receive breakfast and dinner and take part in activities. Municipality Daycare center for younger persons with dementia

As traditional daycare center, but with extended activities based on cooperation with local cultural institutions, a gym, etc. Extended opening hours. Mainly for persons aged 70 years and below.Municipality “Inn på tunet” (Daycare on farm)As traditional daycare, but situated on a farm. Participants take part in daily work at the farm. In general for persons below 70 years old. Private, municipally fina Volunteerism

Activity friendsOne-to-one volunteerism based on “pair-matching” to maintain meaningful activities. Municipality, in coopera with dementia organisati Peer personsPersons with experience as informal caregivers with training as peer persons. May be called for counselling or just to talk.Municipality Experience group for persons with dementia Meeting place for persons with dementia to share experiences. Arranged by volunteers from the dementia organization. Municipality Dementia Café and music groups Meeting places for persons with dementia and their informal caregivers, facilitated by volunteers. Social gathering combined with various activities.Dementia organisation wit municipal support Dialogue groups for informal caregiversMonthly gatherings for sharing experiences or discussing relevant themes. Led by experienced healthcare personnel. Varies if leader is volunteer or paid. Dementia organisation o Municipality Homecare Traditional homecare* Homecare to help maintain ADL-functions, provide medical treatment, etc.Municipality Home help* Practical help to maintain household activities. Municipality or private wit partly municipal financing Dementia Work TeamFor the time being only in selected areas. As traditional homecare but with fewer personnel with higher competence in order to provide individualized follow-up. Municipality

38 Learning activities

Courses for informal caregivers10-12 hours courses on various relevant topics. Municipality, outpati clinic Courses for persons with dementiaProvided by outpatient geriatric clinic – three gatherings of three hours each. Planned composition of groups and adapted education. Informal caregivers may accompany. Outpatient geriatric cli Dementia care ABCTwo one-year courses with monthly gatherings for healthcare personnel at all levels of competency. Municipality Nursing homes

Respite care* Generally up to three weeks nursing home admission – can be occasional or by regular intervals.Municipality Short term examination stay On specialised units. The person is observed over time as part of examintation and identifying care needs. Municipality Long term care* When it is no longer advisable for the person to live home.Municipality Other

Resource center for dementia Advisory unit for persons with dementia, informal caregivers and healthcare services, in groups or individual, on dementia in general as well as in specific challenges.Municipality Care payment -“Omsorgsstønad”* Minor economic compensation for informal caregivers with a high burden of care. Municipality Contact person*Person paid by municipality to maintain meaningful activities– a limited hours every 1 or 2 weeks.Municipality *Not limited to persons with dementia or suspected dementia. References: (Bergen demensforening [Bergen Dementia Association], 2020; Resource Center for Dementia, 2020)

Learning activities for persons with dementia and their informal caregivers, aiming to increase competence on dementia and what it entails, is a defined objective within the Norwegian governmental dementia plan (Ministry of Health and Care Services, 2015). Such activities for informal caregivers have existed for a while, but there is limited evidence as to the effect of these programs (Bruvik et al., 2013; Jensen et al., 2015). Still, qualitative explorations of participants’ experiences with such

interventions has shown that the intervention might be perceived as useful, despite a lack of effect in predetermined outcome measures (Johannessen et al., 2015). Read et al. (2017) described how the lack of knowledge of possible future trajectory makes it challenging for persons with dementia at an early stage to plan ahead and leaves them in a sense of losing control. Accordingly, initiatives of adapted educational programs for persons with dementia have also grown forth.

Various forms of assistive technology have seen a massive growth the last few years.

The stove guard, to prevent a fire hazard, has been common for a long time (Nygård, 2009). Now, the market is abundant, with solutions ranging from electronic pill dispensers and robots, to advanced monitoring and positioning systems (D'Onofrio et al., 2017; Karlsen et al., 2017). It has, however, been challenging to implement technology that supports persons with dementia directly (Van der Roest et al., 2017) There is also limited knowledge as to what and how the end-users, that is persons with dementia and their informal caregivers, perceive these approaches and the relevance of such approaches in their everyday life (Husebo et al., 2019). Currently, the use of technology for home-dwelling persons with dementia is scarce and, during the Covid-19 pandemic, the interest for new technology increased by only 17%

(Gedde et al., 2021).

Volunteerism has a strong tradition in Norway and is a defined area of priority in order to provide meaningful activities for the elderly population in general and for persons with dementia especially (Dementia Policy Team, 2016; Meld. St. 29., 2017-2018; Ministry of Health and Care Services, 2015). Being engaged in volunteerism has been shown to have a beneficial effect on both mental and physical health (Anderson & Bernstein, 2014; Pilkington et al., 2012). Thus, the arrangement of

organized one-to-one volunteer support is considered a win-win-situation – for the person with dementia, for the persons’ informal caregivers, for the volunteer helper, and for society as a whole. Although there is sparse research on volunteerism for persons with dementia, we aslo find indications of these benefits here, along with descriptions of how these arrangements may help to break down some of the stigma when considering dementia (Greenwood et al., 2018). However, there are also challenges related to issues such as organizing, building relationships,

communicating with caregivers or adjusting to increasing demands for support (Greenwood et al., 2018; Herron et al., 2016).

Despite the massive growth in care solutions, the evidence that has been presented in this field does, however, reveal an ambiguity concerning what actually works – and what and who it works for. A large systematic review of ‘what works’ for home-dwelling persons with dementia refers to limited and low-quality evidence, and a general lack of effect on most outcomes (Dawson et al., 2015). In addition, there is a large degree of heterogeneity both in study design and outcome measures between studies of similar interventions. This is supported by a synthesis of systematic reviews on psychosocial interventions (McDermott et al., 2019). Although beneficent effects are found, it is challenging to generalize and point to ‘best practice.’ This is partly attributed to the heterogeneity between individuals living with dementia.

Findings of perceived usefulness among the participants in qualitative follow-up studies should also be considered in this concern (Johannessen et al., 2015).

Consequently, Dawson et al. (2015) point towards individual, flexible and compound solutions as potential success factors.