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The European voice for informal carers
Demographic background

Although the ageing of the Danish population is more moderate than the average in the EU28 it is still marked. In the period 2019-2050 the share of people aged 65+ in the Danish population is expected to grow from 19.6% to 24.4% (EU-28: 20%-28.5%), with most of the growth happening before 2030. At the same time the share of 85+ people will expand by nearly a factor 3 from 2.1% to 5.1% (EU-28: 2.7%-6.1%).

Over the same period, the old age dependency ratio measured as 65+ as percentage of the 15-64-year olds will rise from 30.1% (EU-28: 30.5%) to 45.9% (EU-28: 55.3%).

The Ageing Report scenario suggests that public expenditure as share of GDP would double by 2070

Life expectancy for men and women at age 65 is projected to rise from 18.2/20.8 years (EU-28: 18.1/21.4) in 2017 to 22.0/25.1 years (EU-28: 22.4/25.6) in 2060. From 2013 to 2017, healthy life expectancy for men and women decreased by 0.5 and 0.7 years, respectively, although its levels are still above the EU average.

Under an assumption of no policy change the Ageing Report scenario suggests that public expenditure as share of GDP would rise from 2.5% to 5.0% (EU-27: 1.6%-3.1%) by 2070. The impact of a progressive shift from the informal to the formal sector of care in Denmark would entail an estimated increase by 129% in the share of GDP devoted to public expenditure on long-term care (128% on average for the EU27).

Current Long-term care provision

The Danish Long-Term Care (LTC) system is among the most comprehensive in the EU. Denmark has indeed given explicit policy priority to community care over residential care earlier and more resolutely than other countries and this in order to enable older people with LTC dependency to remain in their own homes.

The goal of Danish eldercare is to increase the quality of life of senior citizens and their ability to manage independent living. Denmark’s overall objective for long-term care policy builds on services that aim to ensure continuity in older persons’ lives even if they become ill and infirm. Older persons in need of personal assistance and care are to be offered help. For elderly people with limited to moderate limitations, assistance is targeted at self-care and active ageing in order to help the recipient perform (or participate in) as many tasks of daily living as possible.

To support this objective, the system is currently being restructured with an increased focus on preventive health care and rehabilitation. In particular, efforts seek to strengthen re-enablement to raise and maintain capacities for independent living and well-being and so as to free up resources for tending better to those with more severe needs.

Any person who develops a need for long-term care is entitled to receive personal care and help with practical tasks, irrespective of income or wealth

Any person who develops a need for long-term care is entitled to receive personal care and help with practical tasks, irrespective of income or wealth. There are no minimum requirements in terms of impairment to receive this type of personal and practical support. Following an individual assessment, the help needed is provided, even if the amount of help time required is inferior to two hours per week.

The system is organized locally through 98 municipalities and is financed via local taxes and general revenue based on block grants from the state. In accordance with national legislation, it is the municipality that decides on the content and scope of services and that is responsible for the provision of necessary care. Once a year, municipalities publish “a quality standard “, which is primarily intended for citizens and entails information on the quality of care that can be expected when in need. The information provided includes details on staff competences and the demands municipalities place on private homecare providers.

Citizens, who are in need of long-term care, may reside in institutional care facilities, receive care in their own homes or informal care. The bulk of people in need of long-term care receive home (nursing) care while institutional care is concentrated on those with severe care and monitoring needs.

Those in need of care who are living in their own home or in special dwellings for the elderly are eligible to receive home nursing, home care and practical help. Health services include health promotion. Home help includes rehabilitation and refers to personal care services (i.e. assistance with activities of daily living, ADL) and domestic tasks (e.g. shopping, meal preparation and cleaning IADL). Additional measures to help care recipients to remain active are also included (e.g. through participation in mentally and physically stimulating activities in day care centres).

Home help is granted following an individual assessment of the recipient’s functional abilities and needs based on the local council’s adopted service level. Since 1996, people aged 75 and older have been entitled to annual ‘preventive’ visits from a case manager employed by the municipality in order to evaluate individual needs and assist with planning for independent living. Assessments have to be multidimensional and comprise all aspects of the individual’s wellbeing, i.e. functional ability, welfare, life content, home conditions and possibilities of self-determination. They also include a review of medication, rehabilitative support, visitation and referral to specialists or other health care professionals, if needed. Clients requiring formal care are further assessed by a home-care manager, and the resulting care plan ends up as a contractual specification for the services needed. There are no pre-defined categories of dependency, but the applicant will be classified along a continuum of dependency according to his/her specific needs. Should the client disagree with the allocation of services, the allocation decision can be appealed.

Policies with a preventive aim are also focused on establishing a larger stock of age-suited houses and securing investments in a better physical infrastructure to achieve a more age-friendly environment. The objective is for older people to enjoy good conditions for a healthy, well-functioning and high-quality life and thus preventing or postponing the need for (home) help and care. In order to manage the rise in LTC needs with the ageing of the population authorities are now placing more and more emphasis on self-care and effective preventive, re-enabling and health-promoting activities. Local authorities are also increasingly seeking to mobilise the positive resource network that informal carers represent for older and disabled persons.

Current developments in the number of people receiving homecare and the average amount of hours allotted are influenced by general improvements in the health of the elderly, by the municipalities’ new emphasis on rehabilitation measures and the greater use of welfare technology that enable citizens to stay independent for a longer period of time, and by overall efforts to streamline the long-term care sector.

People in need of care, and their informal carers, can apply for aids such as beds, wheelchairs, special cutlery, and adjustments to the home to facilitate care in the home, e.g. installation of an elevator or an alignment of doorsteps. Municipalities have different policies on the extent to which they help in these situations. Carers and the cared-for can get assistance from the patient organisations DaneAge, DUKH or Copenhagen Legal Help (which despite its name gives advice to citizens in the whole country to apply for support and, if necessary, appeal against decisions related to care support.

Carer-friendly policy environment

Number of carers

Even though most dependents in Denmark receive formal care, many family members provide valuable support to spouses and elder family members, especially those family members who suffer from dementia. As elsewhere informal carers are primarily spouses and children or grandchildren. But due to the extensive access to formal LTC services informal carers tend to deal only with light to moderate cases of dependency. There is also a growing number of volunteers providing various forms of care to people in need of LTC. The municipal council offers substitute or respite services to spouses, parents or other close relatives caring for a person with impaired physical or mental functions.

According to Carers Denmark though, the estimated number of informal carers in the country amounts to more than 750.000 people, i.e. about 13% of the total population.

Multisectoral care partnerships

There are no general requirements for the involvement of users (patients and informal carers) in the Health Act, nor are there any regulations in support of carers or similar positive rights. Given healthcare professionals’ confidentiality duty, the Health Act regulates access to carers’ involvement in several areas. For example, patients must consent to carers being involved or receiving information. There are nevertheless exceptions – e.g. if the patient is unable to make a decision because of its condition. In the case of permanent disqualification, there is a duty to inform relatives (or guardian) to an extent that allows conditional consent to treatment. Thus, at national level, there are only provisions that limit the rights of carers as a result of the patient’s right to confidentiality and self-determination.

There are regional and municipal initiatives as well as national recommendations to healthcare professionals regarding the added values of meeting with the relatives of seriously ill people, but that is not regulated at national level, unless it concerns relatives of patients who are permanently incapacitated.

Carers’ mental and physical health

The implementation of the national programme ‘Learn to thank yourself every day as a relative (“LÆR AT TACKLE hverdagen som pårørende”) aims to support the relatives of people living with dementia or other long-term diseases to take care of themselves as many develop physical or mental health problems as a result of their caregiving. Through weekly interactive training sessions, relatives share their experiences and build their skills to be able to better tackle stress, potential social isolation and to prevent becoming physically or mentally ill themselves. The national implementation of the education programme is carried out by the Danish Committee for Health Education in 98 municipalities between 2018 and 2021 and the project is financed by the Danish Government.

Access to respite care

Municipalities offer two types of respite support to spouses, parents or other close relatives who provide informal care to a person with reduced physical or mental functional capacity. Replacement care is offered in the home, whereas relief is offered outside the home, e.g. in a nursing home.

Replacement care in the home is seen as permanent home help and is free. The length of the relief period depends on the purpose. It may concern recurring weekends and holidays or relatively long periods of time (up to several months). Carers have to pay for relief and prices tend to differ between municipalities (although they must not be so high that the carer cannot cover rent and other expenses related to their permanent accommodation).

Recognition and definition of carers

In Denmark, there are no laws that defines and protects the rights of informal carers – only a number of recommendations to the health service about how to take care of them.

People who are attached to the labour market and who wish to care for a closely-related person with substantial and permanent impairment of physical or mental functions or a serious, chronic or long-term illness ((including terminal) in the person’s home, shall be employed by the municipal council if:

  • the alternative to home care is full-time residential accommodation away from the home or the amount of care needed corresponds to a full-time job;
  • the parties agree on establishing the care arrangement; and
  • the municipal council considers that there are no strong indications against the person in question (“carer”) caring for the closely connected person.

Access to information and advice

Some municipalities have counsellors for relatives with care responsibilities. In larger municipalities these counsellors may be the working relatives of people with a specific diagnosis, e.g. dementia, (i.e. people who are carers themselves) whilst other municipalities have counsellors working with relatives who themselves are in need of care. Counsellors typically offer individual talks with relatives; opportunities to join networks with other relatives (mutual support); thematic evenings and café meetings on relevant topics; educational programmes for the relatives of people with specific diseases; and courses where relatives also learn how to take good care of themselves. Finally, counsellors can give advice on the support measures and other opportunities for help that are provided by the municipality, and which may be difficult to navigate for people who are new to caregiving.

Mutual carers support groups also exist and meet to discuss specific needs or problems. They may be managed by professionals or volunteers, and they are sometimes completely autonomous. Often the initiative to set up a group is taken by a municipality or a civil society organisation (e.g. patients’ group or volunteers). Support groups are most often thematically organised (e.g. on cancer and dementia). They promote self-help; facilitate exchange of ideas; allow access to practical advice and knowledge; and provide carers with access to a community in which it is possible to share emotions, gain a better understanding about their situation, and benefit from solidarity.

Carers in Denmark (Pårørende i Danmark) offers information and tools to enable carers to care; gather knowledge about carers’ needs, suggest ways of meeting the latter; cooperate with national and local policy-makers on initiatives aimed at carers; help carers get better at looking after themselves and at overcoming difficult situations; work to promote the health and wellbeing of carers; and support networking between carers.

Social inclusion of carers, access to education and employment

In Nordic countries (Denmark, Finland, Norway, and Sweden), the payment to carers – i.e. care allowance – is considered as remuneration.

In Denmark, people who take leave in order to provide care are entitled to a taxable cash benefit, i.e. a care allowance (plejevederlaget). Municipalities, which are responsible for long-term care services, employ family carers directly. The right hereto, as well as the amount paid, depend on several factors, but the period may not last longer than 6 months. The municipality in which the patients live is responsible for the contribution, but agreements/arrangements within the workplace of the carer may affect the conditions for this to happen.

There are two forms of care allowance, one for cases of terminal illness and one for cases of serious and chronic illness. The care allowance in the case of terminal illness is for people who want to take care of someone who is dying in their own home. A doctor must certify that hospital treatment would serve no use, and that the person’s condition does not require them to move to a hospital, nursing home or elderly care institution. Also, the sick person must agree on the arrangement. Both friends and relatives are eligible for the care allowance in cases of terminal illness. People both inside and outside the labour market can get the allowance. Those inside the labour market include wage earners and the self-employed. Those outside the labour market include students and retired people.

For people inside the labour market the amount of the care allowance is 1.5 times the sickness benefit that the person would have been entitled to. There is an absolute and a relative ceiling for the care allowance. The absolute ceiling is EUR 840 per week (2016), equal to 1.5 the maximum sickness benefit. The relative ceiling is that the allowance cannot exceed the beneficiary’s previous income.

People who are outside the labour market are not entitled to sickness benefit and they therefore get a flat-rate amount of EUR 2,010 per month (2016). In very special situations it is possible for the municipality to award a higher care allowance. People receiving the care allowance cannot combine it with study grants, old age pensions or other social security benefits.

There is no building up of social security contributions on the part of those providing care. If two or more people share caring responsibilities, the care allowance can be distributed among them proportionately to their share of care. There is no fixed limit to the benefit period: but prognoses are often short, within a range of 2-6 months, and the allowance expires two weeks after the death of the care-dependent person.

The care allowance for (working) carers of a person with a serious and chronic illness is a right that can be accessed according to a set of well-defined criteria. The municipality is obliged to hire someone to provide care in the home if the alternative is residential care or if the amount of care is equal to a full-time job. The care allowance thus consists in a remuneration of EUR 2,220 per month (2016). In addition, the carer builds up pension contributions of 12% per month, with 4% paid by the insured carer (deducted from the wage) and 8% by the municipality on top of the wage. The benefit can only be received for a period of up to 6 months, but this can be extended by up to 3 months under special circumstances. The period can be split into spells of one month (or even shorter periods, with the employer’s agreement). The allowance can be shared among various people if they fulfil the conditions for employment by the municipality.

The employer gets the care allowance if they continue to pay the full wage during the care leave.

Although the care allowance is paid to people providing care in the home of a care-dependent person, the carer remains entitled to the allowance if the latter goes into hospital or respite care.

There are also cash benefits that compensate for the loss of income for parents of disabled children, as well as several earmarked cash benefits that reimburse certain expenditures. Parents of disabled children can indeed get compensation for loss of work income if the parent has to care for the child at home or accompany the child to examinations or treatments related to the disability. The child’s disability must involve a severe and permanent reduction of functional capacity or be a significant and chronic illness. The size of the compensation is determined on the basis of previous gross earnings. The maximum compensation for loss of income in a 37-hour week is EUR 3,920 per month (taxable). There are no time limits on compensation for loss of income.

In addition to the above, municipalities can provide financial support regarding expenses related to medical articles etc. if these are not reimbursed elsewhere and if a relative, municipality or hospice takes care of a terminally ill person. The support is not means-tested and is paid to the terminally ill person or their relatives based on invoices.

Municipalities can also reimburse 50% of expenses in relation to necessary aids that are consumption goods that cannot be seen as part of normal households. The latter criterion excludes, for example, computers.

Parents of children with permanently reduced physical or mental functional capacity can get support to buy, or make special interior modifications to, a car. Normally, the support takes the form of an interest-free loan which is not to be paid back in full.

The private, supplementary health insurance scheme, Denmark (danmark), subsidises user payments for the private care of a person in the terminal phase of illness in their own home, provided by a general practitioner or authorised nurse. This benefit helps carers to arrange for death to take place in a familiar setting, and thus increase the wellbeing of the carer. The public sector does not provide terminal care by general practitioners in people’s own homes. However, many people in the terminal phase of an illness receive nursing and palliative care in their own home.

References
  • UNECE Policy Brief on Ageing No. 22, September 2019
  • The 2018 Ageing Report, Economic and Budgetary Projections for the EU Member States (2016-2070), EC, 2018
  • ESPN Thematic Report on Challenges in long-term care – Denmark, EC, 2018
  • ESPN Thematic Report on work–life balance measures for persons of working age with dependent relatives, Denmark, 2016
  • Joint Report on Health Care and Long-Term Care Systems and Fiscal Sustainability, EC, 2016
  • Consolidation Act on Social Services, Danish Ministry of Social Affairs, 2015
  • Adequate social protection for long-term care needs in an ageing society, European Commission, 2014
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