Services available to next of kin of someone with dementia
As the next of kin of someone with dementia, you may find you need training, help and support. This article gives an overview of the services that are available.
Next of kin can be a huge source of support, both for those who are ill and society at large. Next of kin can care for the person who is ill and often help out in connection with the organisation of everyday life, contact with the health service and practical help.
Many people spend a long time in the role of next of kin - from the moment the early signs of dementia become apparent, until the person becomes completely dependent on the care and help of others. This can take many years.
Being the next of kin of someone with dementia
The next of kin of people with dementia all differ, like all other relatives. They are at different stages of their lives and have different personalities, interests and circumstances for taking on the role of next of kin.
- Being a partner is different from being a child or friend of someone who is ill.
- Living with someone with dementia is different from living separately.
- Being a child, adolescent or young partner is different from being an adult child or older partner.
- Next of kin can find the role not only meaningful, but also stressful. This can vary through different stages of the disease and will partly depend on your own situation and health as well.
- The relationship between next of kin and the person with dementia before the onset of the disease can affect the experience of being a next of kin.
- Some couples live relatively separate and independent lives, while others spend most of their time together.
- Some families are naturally intimate with each other, while others are not. These circumstances can impact on the role of next of kin and the tasks that they are willing to take responsibility for.
- Some families find that the disease brings them closer together through having a "joint project" to organise, or through the fact that the person who is ill becomes more vulnerable or grateful.
- Other families may find that the disease affects the relationships between them, or that cooperation becomes more difficult because siblings can have different perceptions of the situation and what they should help with.
Consequences of being a next of kin
The term ‘next of kin stress’ is often used to describe the negative consequences that next of kin can experience. These consequences can occur in one or more areas of life, and they can be linked together or interact. The stresses experienced by each next of kin can be affected by both their own resources and situation and circumstances linked to the person with dementia, such as the type of dementia that he or she has, the severity of the illness and the degree of challenging behaviour.
Ensuring that next of kin cope as well as possible is vital both for the next of kin themselves and for the person with dementia. To see a loved one gradually become serious ill and dependent on you can be both mentally and physically distressing, and next of kin may find that their own quality of life is affected.
The role of next of kin can be difficult to combine with a social life or your own activities. It can be difficult to let the person with dementia be alone at home, yet it can also be difficult to have guests. Some people also find that friends and social networks back away.
Many next of kin are themselves elderly and may have disabilities, illnesses or ailments themselves which drain their own strength and energy. In such cases, having a spouse with dementia who may be anxious at night or need help to go to the toilet can be an enormous burden. Next of kin who experience severe stress over time are at greater risk of becoming ill themselves.
Talk to your GP or other people in your municipality
If you suspect someone in your family may have dementia, it is important that you contact your GP, who is the person who normally initiates a dementia assessment. Most municipalities now have a memory team which can assist GPs with the assessment. The GP will sometimes also refer the patient to the specialist health service.
It can be difficult for next of kin to assess for themselves the family’s needs as regards help and support from the municipality when someone in the family has dementia, or when different measures or services are needed. In general, you should contact your municipality’s memory team or coordinator as soon as possible in order to talk about the situation.
It may also be appropriate to contact your GP. However, it is important to be aware that both doctors and other healthcare professionals are bound by a duty of confidentiality and cannot talk freely about other patients if the person themselves is competent to give their consent. The patient must then consent to the next of kin being given information. This also applies where next of kin and the person with dementia have the same GP.
Contact person in the municipality
Many municipalities offer a contact person to people who have been diagnosed with dementia. The contact person or memory team will be able to provide you with useful information about the services that are available and the rights of next of kin.
Even if you feel it is too soon for home nursing or day activities, many organisations offer services which are available to everyone, such as cafés, walking groups, etc. In many places, there are also ‘voluntary activity friends’, who can help to fill the days of people with dementia and provide relief for their next of kin.
What types of needs do you have?
It may also be appropriate to assess whether you need welfare technology or other special provision around the home. Even if you do not need any help during the early stages of the disease, it can be good to know that someone in the municipality is aware of the situation and is following it up, and who you can call if you are wondering about anything or if the situation changes. In many places, the contact person will also contact you regularly to find out how things are going and assess whether new measures need to be put in place.
Omsorg for personer med demens
Personer med Alzheimers sykdom eller andre typer demens mister gradvis evnen til å ta vare på seg selv. De kan trenge regelmessig hjelp.
Illustration: Getty Images
Services available to next of kin
Many municipalities offer excellent services to the next of kin of people with dementia. If the municipality has a memory team, dementia team or dementia coordinator, they will be able to provide information and guidance.
The needs of next of kin vary. Some people need a lot of help and support, while others do not need as much. This means that not all the services will necessarily be suitable for everyone, and that next of kin will need different services at different times during the development of the disease.
For example, some people will want as much information as possible during the early stages of the dementia, while others will “take it as it comes” and find a lot of information about later stages in the development of the disease overwhelming and depressing. One approach is not necessarily better than the other; everyone must do what feels right to them.
Nevertheless, it is important to point out that research and experience show that openness and awareness of the situation can help to improve coping in the role of next of kin, partly through receiving support from people around you. You should therefore accept offers of information, guidance and support when you are ready to receive it.
The rights of next of kin
The less a patient is able to look after themselves, the more rights their next of kin will have.
Illustration: Johnér Bildbyrå AB
Services available to next of kin caring for someone with demanding care needs
All municipalities are now obliged to offer a range of measures for people who are caring for someone with demanding care needs. This obligation follows from Section 3-6 of the Health and Care Services Act (in Norwegian) and stipulates that municipalities must offer:
- education and guidance
- respite measures
- care benefit
It is basically up to the individual municipality to determine how it wishes to organise these services and decide which services they wish to offer each individual.
For next of kin who are caring for someone with demanding care needs, Section 2-8 of the Patient and User Rights Act (in Norwegian) stipulates that they have a right to a decision by the municipality as to whether measures will be implemented in order to ease the burden of care and, if so, which measures will be implemented.
Although the municipality's obligation to provide support for next of kin under Section 3-6 of the Health and Care Services Act concerns persons who care for someone with “demanding care needs”, municipalities should assess whether such support for next of kin can also be given to next of kin who perform less demanding care tasks, as this can help to prevent or delay the onset of greater needs for health and care services at a later date.
Education and guidance
Many municipalities have developed an excellent range of education and guidance services for next of kin, which are often available both to people in the early stages of the disease and in a less demanding situation, and to people who are caring for someone with demanding care needs. Common to these services is that they are intended to equip next of kin with the skills and information they will need to cope with the situation and perform the role of next of kin as they see fit. In such cases, it can for example be useful to learn about the various types of dementia, the symptoms and development of the disease, and the treatment and services that are available.
Next of kin schools and discussion groups
In addition to information and advice from professionals, it can be good to meet other next of kin and share experiences. Next of kin school is a course model where next of kin are given information and support through lectures and group discussions to overcome the practical and emotional challenges associated with caring for a person with dementia.
The discussion groups are intended to enable people in a difficult life situation to give each other support and get help to find solutions in order to cope with everyday life. The discussion groups are led by a professional.
Most municipalities now offer either their own or inter-municipal next of kin schools, while some municipalities also offer discussion groups. It can often be a good idea to attend a next of kin school while the person with dementia is in the early stages of the disease. Most municipalities do not require you to “be caring for someone with demanding care needs” in order to participate. In some places, the specialist health service also offers next of kin schools to certain groups of people.
Respite is a service that is available to next of kin. You can apply to the municipality for this.
For example, next of kin can apply for:
- respite stays in a nursing home in conjunction with holiday
- rolling respite stays, where for example the person with dementia spends two weeks at a nursing home and four weeks at home
- respite in your own home
- day activities
- support contact
Respite care scheme
Respite care is a service for individuals and families who provide care to someone with demanding care needs.
Illustration: Johnér Bildbyrå AB
When necessary, the municipality must offer care benefit to next of kin who are caring for someone with demanding care needs. Both the carer and the person who needs help can apply for care benefit. Whether or not your application for care benefit as a next of kin is approved will depend on whether the municipality considers this to be the most appropriate way to provide services in your particular case.
You may be entitled to care benefit if you perform particularly burdensome care duties and tasks which would otherwise have to be carried out by the municipality.
Illustration: Johnér Bildbyrå AB
National courses for young next of kin
In addition to the services offered within each municipality, national courses are also available which are aimed at children and young next of kin, as well as younger people with dementia. These are arranged either nationally or regionally:
Meeting place for coping tools
Meeting place for coping tools (in Norwegian) is a nationwide course where people who have developed dementia before the age of 65 take part along with a close relative, normally their spouse or partner. The courses are organised regionally and held over two or three days with accommodation provided.
Time to be young
Time to be young? (in Norwegian) is a nationwide weekend course for young people aged 18-30 who have a mother or father with dementia. Two courses are held a year, starting on Friday evening and ending with lunch on Sunday. All travel and accommodation expenses are paid for. Information is also provided on dementia aimed at young people as next of kin.
“Who sees me?” Summer camp for children
The summer camp (in Norwegian) is a nationwide service which is offered to children, where children under 18 take part together with the healthy parent or another carer.
On the Who sees me? (in Norwegian) website, you will find information about dementia aimed at minor children as next of kin.
Where can I find out more?
If you are wondering what services are available in your municipality, you should visit the municipality's website, call the municipality's helpdesk or ask your GP.
There are also organisations which can provide advice and support to people with dementia and their next of kin. For example, you can call the Dementia Helpline on 23 12 00 40.