Author: Marianne van Brussel, mySupport study Strategic Guiding Council Member, The Netherlands
Date of Publication: April 2022
Keywords: demographic developments, dementia, policy developments, small-scale residential care units in the nursing home and in the community, quality of life
Dementia is becoming one of the leading causes of death in the Netherlands
At the end of January 2022, the Netherlands had almost 17.6 million inhabitants . In January 2021 there were 3.5 million people aged 65 and older in the Netherlands. In 2040 there are expected to be 4.6 million. This increase is mainly caused by the number of 75+ people. This group will double from 1.5 million in 2021 to more than 3 million in 2050. And people over 75 run the highest risk of dementia .
In the Netherlands there are roughly 290,000 people with dementia. The current prognosis is that this number will rise to more than half a million in 2040 . The healthcare costs for dementia will therefore rise from € 6.6 billion in 2015 to an estimated € 15.6 billion by 2040. As a result, dementia is developing into the leading cause of death in the Netherlands and the most expensive disease . Dementia is also the frontrunner in terms of personal suffering and disease burden . The above developments are important reasons for the Ministry of Health, Welfare and Sport to not only continue the national policy programs for the theme of dementia, which started in 2004, but also to intensify them moving forward.
Dutch National dementia plans – past, present and future
Since 2004, the Ministry of Health, Welfare and Sport has been committed to dementia with successive programmes: National Dementia Program (2004-2007), Program Chain Care Dementia (2008-2012), Delta Plan Dementia (2013-2020), The National Dementia Strategy (2021-2030). In all these programmes, the Dutch Government collaborates with stakeholders such as Alzheimer Nederland, research centres, social and health care professionals, care providers, regional dementia networks, health insurers and care offices, business partners, local governments and housing associations, and people with dementia and their carers. The purpose of the programs are twofold. On the one hand, they improve care for people with dementia today and look for solutions to prevent or delay the disease for the future. On the other hand, they create a barrier against healthcare costs rising irresponsibly high.
Incentivising small-scale residential care units
With these programmes, the Dutch Government has strongly focused on small-scale residential care units for people with dementia from 2008. This was reinforced in 2009 by the Government’s program to encourage the conversion of large-scale organized care to small-scale care in nursing homes .
This development meant that my father had to leave the care home he resided in and his village because a small-scale residential care unit for people with dementia was also realized at that location. He moved to another care home for a period of time and returned when he developed vascular dementia.
My father needed little time to get used to the small-scale residential care unit. Where he spent a lot of time in his own apartment in his previous care home, he now enjoyed, social as he was, the hustle and bustle of ‘this household’ again. On each of the three floors of the nursing home there are two residential units for 10 residents. The residential units consist of a spacious living room, open kitchen, and 10 small bedrooms with bathroom. On the ground floor is a room where residents can receive visitors and an orangery for daytime activities adjacent to a spacious garden. The residents can move through the entire building via the elevator. Most residents shuffle in a wheelchair without footrests or with a walker. The exit can only be opened via a code to prevent residents from going outside unaccompanied. However, visitors are always welcome.
My father had nice contacts with the staff, knew which residents he could approach and from whom he had to stay away and, according to the staff, he was caring towards the other residents. My father had no trouble getting used to his new environment, but here too he had moments when he wanted to leave, as if he experienced the hopelessness of the situation. During those periods he spoke regularly with the spiritual counsellor.
Every resident is appointed a personal healthcare assistant who takes on ‘first responsibility’, in Dutch: Eerste Verantwoordelijke Verzorgende (EVV). Because the resident loses cognitive functions due to dementia, it is important that the family member who represents the resident (the client representative) and the EVV invest in their relationship. Important end of life care decisions often have to be made during the resident’s stay. This requires trust and confidence to discuss difficult matters and thus to safeguard the quality of life of a loved one.
Important matters concerning the care and well-being of a resident are recorded in a care plan. Care plan meetings are held at fixed times during which the EVV, the doctor, and possibly other practitioners, such as a physiotherapist or occupational therapist, are present. This has been legally established since 2008, but the position of the resident, in this case through the representative, has improved since 2015 with the introduction of the Long-term Care Act (WLZ) .
All agreements about person-centered care are recorded. Care plans can always be adjusted if there is reason to do so, also at the request of the client representative. Family participation is important.
For my father’s care plan, we looked at what he still could and wanted to do, what made him happy and what served his self-esteem. Our family provided three active members: a volunteer for daytime activities, one for client representation and one for the client council.
A few weeks after his 99th birthday, my father suddenly deteriorated rapidly. Shortly before that, he was still participating in activities, although he was eating less and less, but suddenly the moment came when my sister and I had a conversation with the doctor about cutting back his medication and beginning palliative sedation. His medications were examined to see which ones could be reduced and which medications were needed to support him dying comfortably.
On the day that the palliative sedation was started in the morning, my father died early in the evening. An evaluation of his care took place after a few weeks. My sister and I looked back on my father’s stay with the EVV. In the last period of his life, small-scale residency was the best choice for my father: he liked to be in the company of others and his interests were always key in considerations for care and support. During my father’s stay we did not have to make difficult choices about whether or not to treat. The last stage was a very natural process.
The step between home and the nursing home is currently too big
After small-scale residency for people with dementia in a nursing home took off since 2008 as a result of government policy, various studies have shown that these residencies are not automatically better facilities than ordinary nursing homes and that a complete transition to small-scale living in a nursing home is not a matter of course .
There is an increasing need in society to realize small-scale residencies for people with dementia outside the nursing home. This has to do with the fact that there is no suitable care for this group of people. Under Government policy the care homes that provide basic care and supported living have disappeared from the care chain and the threshold of the nursing homes that provide more intensive care has been raised .
For example, Alzheimer Nederland argues in favour of not building more nursing homes, but other suitable residencies for people with dementia. The step between home and the nursing home is currently too big. In a suitable residency, support and care is available if this is necessary, but the person retains autonomy and freedom for as long as possible. This type of residency is for people who do not yet have to go to a nursing home, and in this way can live longer in their new home in their own community. By providing support and care in the community, crisis is prevented and moving to a nursing home can be postponed or prevented. Due to the heterogeneity of people with a dementia diagnosis and the varying types of dementia, it is important to offer several options .
Meeting the needs and the wants of service users
In 2022, Minister of Health, Welfare and Sport responded to the increasing expenditure concerns attached to nursing home care for people with dementia. The Minister finalized a budget in favour of a healthcare system that allows for more types of residency and care outside the nursing home. In doing so, he also responded to the increasing call from society to facilitate other types of residency for people with dementia in addition to the nursing home .
These developments require a more demand-oriented and integrated approach and a focus on the client’s perspective. This has consequences for the barriers (10) between the laws that currently make care for older people possible, but gives room for a shared vision and goals.
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Author: Marianne van Brussel, mySupport study Strategic Guiding Council member, the Netherlands
Marianne studied at the Social Academy to become a medical social worker, and after graduating started her career at a university hospital. Marianne then worked at a home care organization. During this time Marianne made home visits where she developed a care plan and directed care teams of domestic support workers, caregivers and nurses. Marianne returned to school to become an Indication Consultant and worked at the Central Care Center where she conducted home visits and handled applications for home care, daytime activities, admission to care homes and nursing homes.
Marianne also has personal experience caring for an individual living with dementia, as both her mother and father had been diagnosed with vascular dementia. Marianne’s motivation for participating in dementia research is based on both her professional and personal experience caring for individuals living with dementia