Keys to person-centred care to persons living with dementia – Experiences from an educational program in Sweden

Growing old entails an increased risk of disabilities and illnesses such as dementia. The orientation in Sweden on national level is that individuals remain in their own homes if desired and receive person-centred home care. The aim of this study was to describe the experience of an educational program and its influence on daily provision of care to persons with dementia. A life-world approach was used. Data were collected through group interviews with care providers in the context of home. The findings are presented in five themes: Increased knowledge about dementia and treatment, Relationship-building in order to provide good care, Open and flexible approach conveys calm, Continuity and flexibility are cornerstones in the care and Perceived improvements. This person-centred educational intervention resulted in a care that was based on each individual’s personality, preferences and priorities in life. Education given with continuity over time is key to improving provision of care to person with dementia

When the Lifeworld Texture Ruptures : Experiences of Living with Dementia

This thesis is focusing on the lived experience of dementia. Both living with a partner as well as living alone. There is no unequivocal picture of how it is to live with dementia and few studies have been carried out in homes of afflicted persons. A deeper understanding of how it is to live with dementia can be a good starting-point for caring and the organisation of care.    The aim of this thesis is to describe, clarify and explain the lived experience of dementia from a lifeworld theoretical point of view. Another aim is to illuminate how decision makers look upon persons with dementia, their life and their care. Interviews and observations have been used to collect data. Participating informants have been couples with one partner suffering from dementia, persons with dementia living alone, politicians, administrators and social workers. Data was analysed with a phenomenological and a hermeneutical approach.   To live as a couple where one part has dementia (study 1) implies to live in a heteronomous existence where both the person with dementia and the partner become strangers in a world that should be the most well-known and familiar. The couple’s existence is narrowed and controlled by the impact of the dementia disease and the existence  is characterised of hopelessness and homelessness.   To live alone with dementia (study 2) means to live with a broken identity when the person with dementia gradually loses the memory of himself and his life. It becomes a life where the world of the individual is reduced to a quiet background that does not demand attention. The person with dementia does not longer know how he or she should relate to the world. The existence is characterised by a strong sense of loneliness and only a vague knowledge of the situation. The person with dementia longs for other people and gets a sense of boredom in the existence.   The comprehensive interpretation (study 3) shows that life with dementia is characterised by a gradual loss of meaning in life due to a disturbed intentionality. With disturbed intentionality the person with dementia gets increasingly more difficulties in understanding the meaning of the use of everyday objects. The person with dementia fights this and tries to create meaningfulness in the existence – something which gets very difficult and strenuous in time, since even the easiest everyday chores have to be thought through to make sense and even to be accomplished. The effort can in time become overpowering for the person with dementia who then stops doing the chores and becomes passive.   Politicians, administrators and social workers (study 4) are well aware that dementia gives suffering to the afflicted and the partner. The care is not designed to meet their needs for home care, and the decision makers don’t know how to change this. The person with dementia becomes like an object when the social workers don’t includes them in a dialogue about their needs and care. The partner is left alone in solving difficult problems and in making difficult decisions.   The theory of intentionality can help the professionals in the care of persons with dementia. By helping the cared-for-person to ‘stretch the intentional threads’ the caregivers can give the person a possibility to be rooted in the world. A care that supports intentionality and identity and reaches all the way in to the homes of the person with dementia would improve their situation and increase their well-being. This is possible when engaging the person in every-day chores that promote meaning. This kind of care contributes to the possibility for the person with dementia to be rooted in language, time and space.    

Moving from theory to practice : experience of implementing a learning supporting model designed to increase patient involvement and autonomy in care

BACKGROUND: In implementing new programs of care, such as person-centered care, there is a risk that the focus will be at an organizational level, instead of a level that describes what happens in the personal development among staff. The aim of this study was to describe experiences of the implementation process of a learning supporting model designed to increase patient involvement and autonomy in care. The project, which lasted 2 years, involved training sessions, supervision and reflective meetings. Over the period, the staff who participated focused on developing their dialogues with patients to make the patients aware of their own capabilities and to encourage them to be fully involved in the treatment. A reflective lifeworld approach was used. Data were collected through interviews, notes and written stories, and analyzed using hermeneutic analysis with a focus on meanings. RESULTS: At the beginning of the project, the participants perceived the model as abstract and difficult to understand but supervision and reflection sessions enabled understanding and changed the participants' approach to caring. The participants described the model as an approach used in challenging patients to become involved in their care and to take charge of their lives when living with a chronic life-threatening disease. The participants' experience of implementing the model has not been easy but has led to increased self-confidence and feelings of improved competence in dialogue with patients. CONCLUSIONS: Using the PARISH model when critically examining the results shows that in the implementation process there were some difficulties, e.g. the context was supportive and facilitating but there was no appointed facilitator. By making participation in improvement work voluntary, the impact of such work becomes less efficient, less cost-effective and probably less sustainable. Furthermore, implementation needs encouragement since changing approaches takes time and requires patience. Group supervision sessions seem an appropriate way to translate research into practice; systematic scheduled and mandatory group supervision sessions would, therefore, probably make implementation more robust and sustainable. In addition, a well-trained facilitator would be able to motivate staff to undertake daily reflection and participate in group supervision sessions. Reflection seems to be a key component in the personal learning necessary to change work routines and approaches

Suffering caused by care - elderly patients’ experiences in community care

Background: Growing old involves many changes in life and implies an increased risks of illness and different forms of disabilities. Life may change in a radical way when a person gets a disease like dementia or moves to a nursing home due to disabilities or needs. In both cases, it often leads to an increased dependency on care where the patient becomes exposed and vulnerable and thereby at a higher risk for experiencing different forms of suffering. Aim: The aim of this study was to elucidate and gain a deeper understanding of elderly patients’ experiences of suffering in relation to community care in nursing homes and home care services. Materials and methods: A lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings. Findings: The findings were presented in four main themes; an absence of the other in care, an absence of dialogues, a sense of alienation and a sense of insecurity. The findings in this study revealed that persons who were cared for in nursing homes and home care services sometimes were exposed to an unnecessary suffering. The suffering sometimes was caused by various caring actions, that is, unnecessary suffering. The suffering caused by care that aroused was due to caregiver’s inability to be present, to show their face, and truly meet the patient. Conclusion: Suffering from care increased the elderly patients’ feelings of insecurity, loneliness, and alienation; this seemed to be the foundation for patients’ experiences of being outside a human community. There was a lack of knowledge and understanding about the patient’s lifeworld

Suffering caused by care - Patients' experiences from hospital settings

Suffering and well-being are significant aspects of human existence; in particular, suffering and well-being are important aspects of patients’ experiences following diseases. Increased knowledge about existential dimensions of illness and healthcare experiences may be needed in order to improve care and reduce unnecessary suffering. Therefore, the aim of this paper is to illuminate the phenomenon of suffering experienced in relation to healthcare needs among patients in hospital settings in Sweden. In this study, we used a reflective lifeworld approach. The data were analysed with a focus on meanings. The results describe the essential meaning of the phenomenon of suffering in relation to healthcare needs. The patients were suffering during care-giving when they felt distrusted or mistreated and when their perspective on illness and health was overlooked. Suffering was found to arise due to healthcare actions that neglected a holistic and patient-centred approach to care. Unfortunately, healthcare experiences that cause patients to suffer seem to be something one needs to endure without being critical. The phenomenon can be described as having four constituents: to be mistreated; to struggle for one’s healthcare needs and autonomy; to feel powerless; and to feel fragmented and objectified. The study concludes that there are problems associated with patients experiencing suffering at the hands of healthcare providers, even if this suffering may not have been caused deliberately to the patient. Consequently, conscious improvements are needed to lessen the suffering caused by care-giving, as are strategies that promote more patient-centred care and patient participation