Who decides and who gets access to services?
Despite having an illness, every human being has the right to a good and dignified life. The key issues related to the realisation of the rights of people with dementia are related to the right to self-determination, and equality.
“The right to self-determination and the realisation of autonomy have been of key importance for years. We really should get past the idea that dementia prevents a person from making decisions about their life. Often, a person with dementia is capable of making decisions either independently or with support,” says Professor of Law and Ageing Anna Mäki-Petäjä-Leinonen. She leads the Institute of Law and Welfare at the University of Eastern Finland.
In Finnish legislation, the status of people with dementia is governed by, e.g., the Act on Disability Services and Assistance, the Act on Care Services for Older People, and the Act on the Status and Rights of Patients. According to Mäki-Petäjä-Leinonen, national legislation is on a fairly good level, with the exception of the Act on Self-determination, which has been under preparation for a long time.
In everyday situations, social welfare and health care professionals assess whether a person is capable of adequately understanding what they are doing in a decision-making situation. If a court of law has to assess the capability of someone with dementia to decide on their own affairs, the assessment often relies on medical evaluations. According to Ervasti, professionals have to weigh situations on a case-by-case basis, balancing between self-determination and protecting the person.
“Health care professionals are required to comply with the principles of law in their work. Can a person be allowed to make a decision in a particular situation, or should they be protected instead? Family members often also play a role, and many would like to do everything they can to protect their loved one. The issues at hand are very diverse,” Ervasti and Mäki-Petäjä-Leinonen say.
At the early stages of the disease, a person with dementia may give a continuing power of attorney or make an advance directive. If no advance directive can be found, the presumed wishes of the patient are interpreted on the basis of how they used to make decisions when things were normal.
Services for people with dementia are interpreted in different directions
The realisation of the rights of people with dementia is also closely linked to equality. The services available to someone with dementia is affected by, e.g., whether the services are interpreted to be part of disability services or services for the elderly. If the interpretation is that the services are granted on the basis of disability, a person with dementia will have a better access to transport services under the Act on Disability Services and Assistance than an elderly person under the Social Welfare Act.
The need for support of working-age people with dementia may be very different from those of older people with dementia. Yet, it is still common to draw a parallel between people with dementia and elderly people, because 70% those diagnosed with dementia are over 65 years old.
“Among those with dementia, older people and people who are lonely are the most vulnerable. Even for those who have an ageing spouse at their side, it is worth asking whether they can use digital services and whether they can cope with informal care,” says Mäki-Petäjä-Leinonen, highlighting the realisation of support in informal care.
“Many family members giving informal care deal with the matters of their spouse, father or mother without support. They either don’t know how to seek support or they don’t want to, or they are denied it. If a person knows how to seek support for informal care, they usually know how to seek access to other services as well. Then there are informal carers who slip through the cracks of the support system and get overburdened by the burden of care.”
The status and situation of informal caregivers vary depending on the problems faced by the person they are caring for. Some face difficult and complex situations. Dementia also affects people in different ways: some become easy-going, others become aggressive and challenging.
“The earlier the diagnosis is made, the sooner it is possible to prepare for what’s ahead, and to get guidance and counselling. But who should give the necessary guidance and counselling, that’s a good question,” Mäki-Petäjä-Leinonen says.
In addition to social welfare and health care professionals and memory nurses, organisations such as the Alzheimer Society of Finland play an important role in the counselling and guidance of people with dementia.