Brain health encompasses a broad field: the preservation and enhancement of brain health and function, the prevention of injury and disease, as well as what is to some extent a very wide range of diseases, injuries and conditions. However, some needs and challenges are applicable across the board and form the basis for joint efforts in the field. This is, for example, apparent both from the knowledge base and political documents and through the insight work relating to the brain health strategy.
Those affected by brain diseases can face different challenges to varying degrees at different stages of the development of the disease. Some people with brain diseases face complex and extensive challenges that greatly affect them in their everyday lives, while others face challenges which, although they may appear less apparent to others, can collectively be very burdensome to them, their relatives and society as a whole.
The list of challenges and needs may be extensive, but the Directorate of Health has opted to highlight some of the most prominent and key challenges that can affect several groups of brain diseases.
Stigma, invisible symptoms and diagnostic overshadowing
Many people encounter prejudice due to their brain disease and many do not disclose their condition to others out of fear of being stigmatised (Lang et al., 2022). In a survey of individuals with neurological conditions, 84% stated that they experience stigma as a direct result of their condition (European Federation of Neurological Associations (EFNA), 2024). The three main areas in which stigma is most often experienced are in interaction with health professionals (46%), in the workplace (19%) and in the community (11%) (ibid.).
A number of causes may lie behind this stigmatisation, including a lack of understanding (European Federation of Neurological Associations, 2018). Stigmatisation can cause people who experience symptoms or are affected by brain disease to decide not to seek help and treatment. It can also lead to mental health problems, functional impairment and poorer quality of life. Many people also encounter discrimination due to brain disease (Simonsen et al., 2019). In some cases, brain disease can reduce insight into one’s own functional impairment and thereby impair the person’s ability and motivation to seek help and follow-up treatment themselves (Landi et al., 2016).
Some people experience diagnostic overshadowing, where it can be challenging to find the right diagnosis because it is overshadowed by another diagnosis (Elgen & Lyngre, 2021).
One survey found that 56% of respondents had difficulty describing their symptoms to their doctor, which in part led to 67% being misdiagnosed (European Federation of Neurological Associations (EFNA) (2024).
For many individuals with a brain disease, their symptoms can be almost invisible (European Federation of Neurological Associations, 2018), while the disease burden as a result of the health challenges they have to live with is considerable. In its survey, the European Federation of Neurological Associations (EFNA) (2024) reported that respondents stated that three of the most widespread invisible challenges they encountered were fatigue (85%), pain (74%) and sleep problems (74%).
Treatment and follow-up
Effective treatments are available for some brain diseases, while for others there is no curative treatment. This means that individuals with a brain disease often have to live with chronic problems for a long time. The focus will therefore be placed on symptom relief, prevention of deterioration and maintenance of function. The conditions vary in cause, symptoms and course, but they can all significantly affect quality of life and require long-term treatment and follow-up (Steinmetz et al., 2024).
For those living with a chronic disease, good support is important in enabling them to maintain a healthy lifestyle and level of functioning and to master their own health and life situation. Many people living with a brain disease do not receive adequate follow-up for a number of reasons. Individuals with multiple chronic diseases have varied needs that are often not met by ordinary treatments (Meld. St. 9 (2023-2024)). The complexity of the conditions can make it difficult to make accurate diagnoses and provide proper treatment. This can lead to misdiagnosis and delayed treatment, which in turn can further exacerbate symptoms and increase the burden on patients and caregivers (Ningrum & Kung, 2023).
Knowledge and health literacy
Surveys indicate that people know less about brain health than other health challenges (Budin-Ljøsne et al., 2022; Fredheim et al., 2021). Better knowledge among the population could help individuals to improve their own brain health. A significant proportion of the population also has a low level of health literacy generally (Le et al., 2019), which limits the ability of the population to be active participants in their own health and overcome health challenges. For many brain diseases, we know a lot about effective preventive measures, which are in line with the prevention of other cardiovascular diseases (Aamodt et al., 2024). However, brain diseases cover a wide range of different diseases and conditions and only limited knowledge is available concerning some of them as regards what is needed to prevent them (Wang et al., 2020).
A systematic review of the population’s awareness of brain health shows that, although many people do have a knowledge of brain health, fewer people actually take action in a way that is good for their brain (Niechcial et al., 2025). This indicates a need to motivate the population into changing their behaviour in order to promote their brain health. Views also varied according to age, gender and socioeconomic status. It is therefore important to include under-represented groups in order to obtain a better knowledge base and adapt the information to their needs (ibid.).
User involvement
The right to self-determination is one of the most fundamental human rights. It is essential for achieving many other human rights and important for safeguarding human dignity (Skarstad, 2019). In accordance with the Patient and User Rights Act, users have the right to be involved and have a say in their own treatment by the health service and the health and care services are also obliged to involve users.
A survey conducted by Olsson et al. (2025) on barriers to user participation in municipal healthcare identified two key findings. The study revealed that participants did not believe that there was a holistic plan for user participation, which had an adverse impact on the level of user participation. The second finding was that it was more difficult to enable users to actively take part in the health services, because the organisation did not have a culture that supported user participation (ibid.).
User participation at group and system level assumes that the experiences of patients and relatives are actively utilised to improve and further develop healthcare services. However, significant differences remain as regards how municipal health and care services and the specialist health service emphasise and safeguard user participation (Ministry of Health and Care Services, 2017). There are also challenges in ensuring user participation in research (Bjåstad et al., 2024).
The role and challenges of relatives
Relatives play a crucial role and their contributions are considered to be just as comprehensive as those of professional care (Ministry of Health and Care Services, 2020). Most patients and relatives want to play a more pivotal role in monitoring their own condition. Self-care training throughout the course of a condition is essential in meeting this need (Ministry of Health and Care Services, 2017).
Being a caregiver to someone with a brain disease can be demanding. The persistent worry and high stress levels that often arise when a loved one has a brain disease can lead to a number of health challenges for relatives. Factors such as the role of the person affected, concerns about the future, the care tasks themselves, how the person deals with their own brain disease and support from relief agencies can all influence how individual relatives perceive the burden (Pårørendesenteretr, 2017).
Children are affected when a parent or sibling develops a brain disease. Being a caregiver as a child can mean less time spent with parents because of illness and treatment and more time alone. Routines can change and everyday life can become more unpredictable. Parents may also have less energy to be emotionally present for their children because they are affected by the situation and have obligations that need to be fulfilled (Bergem, 2022). Children who are relatives may experience mixed emotions when their own needs are disregarded. They may feel guilt, anger, disappointment and shame and be afraid that they will also develop the brain disease that their parents or siblings have. They may also experience a lack of information and recognition (Ytterhus, 2024).
It will be important to take account of the family perspective, so that services for individuals with brain disease and their relatives become more involved and safeguarded (Akershus University Hospital Trust, 2015).
Organisation and cooperation within the health and care services
In order to provide high-quality care and treatment, close cooperation between the various levels of the health and care services is essential. Many people with brain disease need extensive help from both the municipal health and care services and the specialist health services. Many find that the health and care services are not sufficiently well coordinated and have to organise their own healthcare (Meld. St. 9 (2023-2024)). One particular challenge in this context is the management of comorbidity between mental disorders, neurological disorders and/or dependency disorders. For some people with brain disease, it can be difficult to determine what is the right health service for assessment and treatment (Oslo University Hospital, 2021). It can also make it harder to develop suitable strategies for promoting and safeguarding brain health (Bègue et al., 2025).
The way in which health and care services are organised can have consequences for brain health among the population (NOU 2016:17, 2016), for example by leading to unwanted variation (National Audit Office, 2019-2020). The Government’s goal of more preventive health and care services can lead to long-term health benefits, including within brain health. This can lead to better resource utilisation and reduce the pressure and financial strain on the health and care services (NOU 2023:4, 2023).
Rehabilitation services
The rising number of elderly people with concurrent conditions and long-term treatment needs is creating additional needs as regards the better coordination of services (Meld. St. 9 (2023-2024)). Studies show that many patients with brain disease do not receive the rehabilitation services they need from the municipal health and care services or the specialist health service. Furthermore, it appears that the cooperation between the municipal health and care services and the specialist health service is not meeting the needs of patients. The availability of specialised rehabilitation services varies between health authorities (National Audit Office, 2024a). Helseatlas (undated) shows that the use of health services in connection with many chronic brain diseases varies depending on where the patient lives.
The National Audit Office (2024c) notes that the inadequacy of rehabilitation services can have serious consequences for the health of people with brain disease and their ability to work, lead a fulfilling family life and pursue leisure activities. In 2023-2024, the National Audit Office (2024c) carried out a study of rehabilitation services in the health and care services in Norway. The survey found that many municipal health and care services lacked statutory rehabilitation expertise. The survey also indicated that the management of rehabilitation services is inadequate at every level (ibid.).
Agenda Kaupang (2024) has conducted a survey among 27 Norwegian municipalities concerning variations between municipalities that should be taken into account in the work to strengthen the rehabilitation field. The survey identified challenges relating to demographic trends, municipal finances and personnel shortages. It was also found that few municipalities have established structures or arenas for working with rehabilitation at system level, even though rehabilitation has been the focus of more attention in recent years. The organisation of rehabilitation services varies, with larger municipalities often using a centralised model with a higher degree of specialisation, while smaller municipalities tend to have a more decentralised organisation (ibid.).
Agenda Kaupang (2024) also showed that one general challenge is a lack of access to relevant management data, both nationally and locally. A number of municipalities point out that current systems such as IPLOS are unsuitable for rehabilitation purposes and call for national quality indicators. Furthermore, there are challenges in the interaction with the specialist health service, including task-shift and lack of equivalence (ibid.).
Habilitation services
Many people with habilitation needs face major health challenges and therefore need extensive health and care services. Many people also need services from various stakeholders in order to lead a good life with good brain health (Directorate of Health, 2024b). Families with children who face complex challenges often need support from several services (Tøssebro et al., 2023).
However, studies also show that there are substantial differences and insufficient capacity among the health trusts’ habilitation services as regards children and young people (National Audit Office, 2021). There are considerable variations between municipalities as regards the use of relief. The way in which the various offices of the county governors handle appeals against individual decisions regarding the health and care services among the municipalities is of great importance in determining which services children and their families receive. Limited information is available regarding how families can get help, which means that the families of children with habilitation needs often have to obtain information and seek help themselves. Coordinating the services around children with habilitation needs works to a limited degree. As a result, many families find they need to coordinate the services themselves (ibid.).
Individuals with habilitation needs have a higher incidence of comorbidity compared with the rest of the population (McCarron et al., 2011). Many individuals have several chronic conditions (Hermans & Evenhuis, 2014) and are at greater risk of developing additional challenges, such as sensory impairments, central nervous system disorders and sleep problems (Oeseburg et al., 2011). They are among the most frail (Ahlström, 2020) and are at greater risk of dying (Reppermund et al., 2019). Although individuals with habilitation needs often encounter health challenges more often than the rest of the population, they rarely get the help they need for these challenges (Bitsko et al., 2009).
Many people with habilitation needs understand what a healthy lifestyle means, yet it still seems difficult for them to make healthy choices (Kuijken et al. 2015). This indicates that individually tailored measures will be needed to design, implement and follow up on health-promoting measures for this group. Among other things, consideration should be given to the individual’s lifestyle and health needs, in addition to preferences, motivation for changing behaviour, physical disabilities, cognitive functioning and the need for guidance and assistance from others (ibid.).
Polypharmacy
For individuals facing chronic health challenges, as in the case of many people with brain disease, it is often the caste that several regularly take five or more medications at the same time (Varghese et al., 2024). This is known as ‘polypharmacy’ and is common in both the elderly and younger people in risk groups. Polypharmacy increases the risk of negative consequences such as falls, frailty, disability and mortality (ibid.).
According to Strand et al. (2023), 67% of people living at home over 65 years of age took five or more drugs in 2016, while 28% took ten or more. The Norwegian Prescription Database does not include people living in nursing homes. Polypharmacy and the risk of side effects would probably be higher if nursing home residents were to be included (ibid.).
According to the World Health Organization (2019), polypharmacy is a major and growing public health problem among all healthcare services worldwide.
Research and socioeconomic burden
Norway has a long history and solid background in research on the brain and research has made significant contributions to many clinical research fields. However, there are still brain diseases where not enough is known about the causes and treatment methods are ineffective (Kumar et al., 2024). The increasing incidence of brain diseases is placing considerable strain both on those affected and on the socioeconomy (Storstein, 2020; Wang et al., 2020; Zhang et al., 2020). More research is needed to learn more about brain health, understand the mechanisms behind brain function and dysfunction and find effective methods for promoting brain health and treating brain diseases (Wang et al., 2020).