Looking for integrated elderly care in practice

The goals for person-centered integrated care in Finland

In Finland, one of the Nordic welfare states, integrated care has been the focus of national public sector reform which started in 2023. The public welfare and health services based on the legislation are to be organized into 18 welfare counties and funding is to be transferred from the municipalities to the national level. Based on the reform act the welfare counties will be responsible for integrating the municipal, national and other services into person-centered services (Act 612/2021, 2021) Pilot programs for this change have been conducted through national integrated care pilot projects related to services for the elderly, families with children and people with disabilities (Hallitusohjelma, 2019).

One journey from independent living to long-term elderly care

I have studied the theories and the policy papers of integrated care from 2017. In addition to this I followed my mother's care journey over the last three years. The distance between the policy strategy and integrated care in action seems large. Until the age of 78, our mother lived an independent and active life alone. She enjoyed singing in a choir, outdoor activities, housework, took care of herself and met friends and relatives. She loved swimming and cycling. Nine years before falling ill, she moved to a communal apartment for the elderly, where she got new friendships with all essential services nearby. We three adult children with grandchildren were important to her and she visited us often.

When she turned 78, we family members noticed changes in her daily life and behavior. She would call and tell us that she was worried, felt lonely or was in a bad mood. When visiting her, she made coffee and there were no visible problems. At the age of 79 things changed. She found it challenging to cope with everyday matters. She forgot the appointments with the doctor, the chiropodist and the hairdresser. She lost her cell phone, wallet and keys at some point. Yet she did not mention the visits to the health center.

The social and health center started regular home care nurse visits without telling the family. The reason for the nursing care was medication problems. Mother forgot to take medicine, the drugs got messed up or she took the drugs several times a day. Although the nurse supervised the medication, mom's condition did not improve. She was very tired, slept a lot, could not tell evenings from mornings, spoiled food found in the fridge and her visits to the friends and relatives became less frequent. In 2020 we started preparing the party for her 80th birthday. It used to be very important for her to celebrate birthdays with the family and the friends. This time she refused to participate in the celebration of her own special day.

Ultimately there was no party, because the day before her birthday our mother suffered a serious illness attack. Almost a yearlong care journey from home to nursing home started (Figure 1).

During a morning visit the home care nurse noticed something wrong with our mother and called an ambulance. At the specialized university hospital, extensive cerebral hemorrhage caused by vascular dementia was diagnosed. Vascular dementia – how could we family members not know this diagnose? The neurologist from emergency care told us there was nothing to do. We just had to wait and see what would happen. After three days she was unexpectedly transferred from the emergency care to the specialized acute inpatient ward.

A week later they transferred her to the acute internal medicine ward at the local health center. After two weeks she was transferred to the neurological rehabilitation ward in the same hospital. An intensive rehabilitative therapy, physiotherapy, speech therapy and occupational therapy started and mother began to recover with baby steps. After two months of rehabilitation, the therapies were stopped. Staff told us that our mother was given the option of long-term care. Based on a decision she queued for a place in an elderly home for six months. With the status of a long-term patient, no rehabilitation therapies occurred. Presently mother has lived in the nursing home almost one and a half years. Housing, care and cure, doctor's appointments and meals are included in the elderly care fee.

Integration as mutual understanding

Due to a cerebral hemorrhage mother lost her ability to speak, so we family members tried to interpret and communicate her needs to staff. It was not easy, even impossible. Whatever we conveyed never seemed to reach the next shift. We witnessed patient injuries related to ward or room transfer and left unattended. At times she was found on the floor of the room or bathroom, or on another bed. This occurred repeatedly in four units.

What surprised me most was the impact of the decision-making of long-term care at the rehabilitation ward. After ending the occupational, speech and physiotherapy, our mother's functional capacity began to decline. She became frustrated and depressed, even suicidal talk. When the symptoms appeared, only the medication was increased. We family members started to rehabilitate her in our own non-professional way until moving to a nursing home after six months queuing.

Now after one and a half years at the nursing home our mother appears to have settled in, even though she does not understand where she is and who the people around her are. She has some mobility inside the ward with a rollator or in a wheelchair when she is assisted. When visiting her, she often stays on her own while the staff are busy due to limited resources. She is not able to read and has a lack of energy to watch television. With the family she feels safe, asks some questions and speaks short sentences.

I used to sing old songs during my visits. Even though she has difficulties with speech and cognition, she hums and sometimes even sings with me. One day when I was leaving a nurse approached me. She said that mother is satisfied and calm for a long time after the singing sessions. The songs increase positive feelings, even though she doesn't remember my visit. This is an example how the patient's own memories and recourses can be activated and utilized to support care. It also increases one's quality of life and reduces the burden on nursing.

Towards more personalized and integrated care

As a relative and an integrated care researcher it seems unclear how person-orientation can be realized in situations when the patient is unable to speak and there is negligible or no discussion together with significant others. The dialog with caregivers, significant others and the patient is essential toward holistic, integrated, person-centered and patient safe care. Especially transferring the patient from one unit or a room to another must be seen as a need for integration instead of a risk in patient injury. Based on my experience it seems the person-centered care and the quality of services depends on how much family members have time to participate, monitor and evaluate the services. Regardless the feedback and wishes have not always been welcome.

From the perspective of this case, multidisciplinary care is rarely visible. I hope for more rehabilitative care to be included in the daily elderly care and cure. The processes need to be developed with the expertise of multiprofessional teams including the functional aspects of patient care, as well as speech and physiotherapy. The evidence-based knowledge and ideas of clients and relatives must be utilized to develop and implement good practices. Enriching the elderly's everyday lives by adding music, play and body movement in cooperation together with the volunteers and the third sector is also important. This means that integrated care has to collaborate with non-governmental organizations.

Based on the theories and the experience of my mother's journey, I found personalized care, multiprofessional competence and multidisciplinary management as a key ingredient toward more person-centered elderly care. A personalized and holistic care plan is needed but it should not be just a summary of occurred services. It must also identify one's physical, mental and social abilities, interests and limitations also, like a plan of one's quality of life. The goals of plan must be set, evaluate and refine together with the patient, the significant others and the professionals. The significant others as a resource should not be forgotten. And when the patient is transferred from one unit to another, the personalized plan needs to be communicated carefully to staff with the new unit.

Who cares integrated care?

Several researchers have found integrated care a multilevel and complex system (Valentijn et al., 2015). The implementation of integrated care is complex and difficult, too (Emerson and Nabatchi, 2015). As an integrated care researcher, a developer and a daughter of a long-term patient, I agree with this. Implementing integrated care requires large-scale cultural, organizational and political change and much more multiprofessional cooperation (Miller and Stein, 2020). But this is not sufficient on its own, I think. If integrated service delivery does not meet the persons' needs, capabilities and wishes, it cannot lead to the positive outcome we all want.

The system-level integration is a large-scale cultural change with training in knowledge and attitudes for professionals and time for multidisciplinary work (Stein, 2016). Without multidisciplinary decision-making or shared objectives true integrated care is not possible. But we need to remember that integrated care is not a temporary or short-term developing project. Continuous learning from experience, evaluation of the outcomes and disseminating evidence-based practices are essential. The goals for care integration must be measurable as well as subjected to research and evaluation. The political and strategic decision-makers are the key stakeholders when approving the objectives and agenda for care reform toward integration. They must also ensure that person-centered integrated care is achieved against all odds.