Adult-Child Caregivers’ Motivations when Caring for Home-Dwelling Parents with Dementia
Keywords:home-dwelling parents, dementia
It is often seen as demanding to be an informal caregiver of a home-dwelling relative or friend with a long-term illness. Adult-child caregivers are important resources for both their ill parents and their community healthcare services. Dementia is one of the most severe chronic long-term illnesses and represents comprehensive challenges for public health in Norway as in the rest of the world. Research within the caregiver field has generally focused on primary caregivers, the burden of taking on the caregiver role, and interventions to improve health outcomes. Less research has been devoted to understanding how secondary caregivers, such as adult children, remain motivated and how they experience community healthcare services, applying recent theoretical approaches such as self-determination theory and relationship-centred care. Therefore, the overall aim of this thesis was to gain a deeper understanding of adult children’s motivations to remain in the caregiver role when parents with dementia live at home.
The current PhD project applies a qualitative multi-method design including the following three methods: 1) an integrative literature review of the previous research literature concerning the motivation of caregivers of persons with long-term illnesses, 2) individual face-to-face semi-structured interviews with 21 adult-child caregivers who had home-dwelling parents with dementia, and 3) focus group interviews with 15 of the adult-child caregivers who had been individually interviewed. Analyses were conducted using narrative analysis and systematic text condensation.
There is consistency between caregivers of persons with long-term illnesses and persons with dementia, describing their quality of motivations and how they experienced being caregivers. High-quality motivation depends on the satisfaction of the caregivers’ three basic psychological needs for competence (understanding of diagnosis, management of symptoms, problem solving, communication skills, knowledge of appropriate healthcare services), autonomy, (available options, planning, freedom of choice regarding tasks), and relatedness, (interacting with parent with dementia and others, being part of the care team, mutual respect, acknowledgement, dialogue, belonging, meaning something to others). Thwarting those psychological needs could lead to amotivation. The main issues thwarting caregivers’ motivations include parents being resistant or refusing to receive community healthcare services, challenges in getting access to timely healthcare services, and not being appropriately involved in their services. Still, caregivers of persons with dementia often prioritised their parents’ needs over their own. The literature review found the three needs of competence, autonomy, and relatedness to be equally important in predicting the quality of caregivers’ motivations and thereby their well- being, as according to the self-determination theory. From the perspective of adult-child caregivers, these basic needs were confirmed as motivational drivers when caring for a home-dwelling parent with dementia. Yet, they reported relatedness as their main motivational driver, including relations with their parents with dementia, with persons in their social network, and with their parents’ community healthcare services. Caregivers wanted to be acknowledged as competent partners in the care team who utilise significant efforts to improve the home-dwelling period for their parents. These findings imply that healthcare professionals should value the importance of relatedness when interacting with caregivers of persons with dementia.
By applying self-determination theory combined with a relationship-centred care approach, this thesis offers a deeper understanding of caregivers’ motivations in the long-term illness context and, in particular, in caring for persons with dementia. A caregiver’s motivation is described along a continuum representing different qualities of motivation. Addressing caregivers’ motivations is necessary, as the quality of their motivations for caregiving has consequences for their health and well-being. Caregivers’ motivations to remain in this type of role are closely related to satisfaction or thwarting of their basic needs for competence, autonomy, and relatedness. To remain motivated throughout a parent’s trajectory of dementia, support to fulfil the three needs is required. Dyadic improvement efforts addressing both caregivers’ and patients’ needs are recommended.
Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: a clinical review. JAMA, 311(10), 1052-1060.
Al-Janabi, H., Carmichael, F., & Oyebode, J. (2018). Informal care: choice or constraint? Scandinavian Jornal of Caring Science, 32(1), 157-167.
Alzheimer Europe. (2013). The prevalence of dementia in Europe - Norway. https://www.alzheimer-europe.org/Policy/Country-comparisons/2013- The-prevalence-of-dementia-in-Europe/Norway
Alzheimer's Disease International. (2018). From plan to impact. Progress towards targets of the Global action plan on dementia. https://www.alz.co.uk/adi/pdf/from-plan-to-impact-2018.pdf?2
Atkinson, J. W. (1964). A theory of achievement motivation. In J. W. Atkinson (Ed.), An introduction to motivation (p. 240-268). Van Nostrand.
Badr, H., Smith, C. B., Goldstein, N. E., Gomez, J. E., & Redd, W. H. (2015). Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: Results of a randomized pilot trial.
Cancer, 121(1), 150-158. https://doi.org/10.1002/cncr.29009 Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review, 84(2), 191-215.
Barry, R. A., Bell, J., Batista, S. G., & McKibbin, C. (2020). Why Care? A Self-determination Theory Perspective of Informal Caregiving. In B. Ng & G. Ho (Eds.), Self-Determination Theory and Healthy Aging: Comparative Contexts on Physical and Mental Well-Being (p. 93- 126). Springer Singapor.
Beach, M. C., Inui, T., & Relationship-Centered Care Research Network. (2006). Relationship-centered care. A constructive reframing. Journal of General Internal Medicine, 21(1), 3-8.
Beinart, N., Weinman, J., Wade, D., & Brady, R. (2012). Caregiver Burden and Psychoeducational Interventions in Alzheimer's Disease: A Review. Dementia and Geriatric Cognitive Disorders Extra, 2(1), 638-648.
Benner, P. (1994). Interpretive phenomenology: embodiment, caring, and ethics in health and illness. Sage Publications.
Bernild, C. (2016). Pårørende mellem system og livsverden. In S. Lehn- Christiansen (Ed.), Ulighed i sundhed (p. 199-227). Frydenlund Academic.
Biesta, G. (2010). Pragmatism and the philosophical foundations of mixed methods research. In A. Tashakkori & C. Teddlie (Eds.), SAGE handbook of mixed methods in social & behavioral research (2nd ed.). SAGE.
Bjørge, H., Kvaal, K., Småstuen, M. C., & Ulstein, I. (2017). Relationship Quality and Distress in Caregivers of Persons With Dementia: A Cross-Sectional Study. American Journal of Alzheimer's Disease & Other Dementias, 32(3), 157-165.
Bjørge, H., Sæteren, B., & Ulstein, I. D. (2016). Experience of companionship among family caregivers of persons with dementia: A qualitative study. Dementia, 18(1), 228-244.
Blix, B. H., Stalsberg, H., & Moholt, J.-M. (2021). Demografisk utvikling og potensialet for uformell omsorg i Norge. Tidsskrift for omsorgsforskning, 7(1), 1-14.
Brown Wilson, C., Swarbrick, C., Pilling, M., & Keady, J. (2013). The senses in practice: enhancing the quality of care for residents with dementia in care homes. Journal of Advanced Nursing, 69(1), 77-90.
Bruvik, F. K. (2014). Persons with dementia and their family carers - Quality of life, burden of care, depression and the effect of psychosocial support. [PhD Thesis]. Universitetet i Oslo.
Bøckmann, K., & Kjellevold, A. (2015). Pårørende i helse- og omsorgstjenesten: en klinisk og juridisk innføring (2. utg. ed.). Fagbokforlaget
Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41(5), 545-547.
Cherryholmes, C. H. (1992). Notes on Pragmatism and Scientific Realism. Educational Researcher, 21(6), 13-17.
Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340-350.
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: An exploratory comparative design. International Journal of Nursing Studies, 47(10), 1262-1273.
Connor, K., Siebens, H., & Chodosh, J. (2015). Person-Centered Approaches to Caregiving. In J. E. Gaugler & R. L. Kane (Eds.), Family Caregiving in the New Normal. Elsevier Science & Technology. http://ebookcentral.proquest.com/lib/uisbib/detail.action?docID=2049 243
Cossette, S., Belaid, H., Heppell, S., Mailhot, T., & Guertin, M.-C. (2016). Feasibility and acceptability of a nursing intervention with family caregiver on self-care among heart failure patients: a randomized pilot trial. Pilot and Feasibility Studies, 2(34).
Crellin, N. E., Orrell, M., McDermott, O., & Charlesworth, G. (2014). Self- efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging & Mental Health, 18(8), 954-969.
Creswell, J. W., & Creswell, J. D. (2018). Research design: qualitative, quantitative & mixed methods approaches (5th edition). Sage Publications.
Creswell, J. W., & Plano Clark, V. L. (2011). Designing and conducting mixed methods research (2nd ed.). Sage.
Custers, A. F. J., Westerhof, G. J., Kuin, Y., Gerritsen, D. L., & Riksen- Walraven, J. M. (2012). Relatedness, autonomy, and competence in the caring relationship: The perspective of nursing home residents. Journal of Aging Studies, 26(3), 319-326.
de Oliveira, D. C., Vass, C., & Aubeeluck, A. (2015). Ageing and quality of life in family carers of people with dementia being cared for at home: a literature review. Quality in Primary Care, 23(1), 18-30. https://primarycare.imedpub.com/ageing-and-quality-of-life-in- family-carers-of-people-with-dementia-being-cared-for-at-home-a- literature-review.php?aid=3759
de Witt, L., & Fortune, D. (2019). Relationship-Centered Dementia Care: Insights from a Community-Based Culture Change Coalition. Dementia, 18(3), 1146-1165.
Deci, E. L. (1975). Intrinsic motivation (Vol. 1). Plenum Press.
Deci, E. L., & Ryan, R. M. (2014). Autonomy and Need Satisfaction in Close Relationships: Relationships Motivation Theory. In N. Weinstein (Ed.), Human Motivation and Interpersonal Relationships: Theory, Research, and Applications. Springer Netherlands: Imprint: Springer.
Denzin, N. K., & Lincoln, Y. S. (2003). The Landscape of qualitative research: theories and issues (2nd ed.). Sage.
Dewar, B., & Nolan, M. (2013). Caring about caring: developing a model to implement compassionate relationship centred care in an older people care setting. International Journal of Nursing Studies, 50(9), 1247- 1258.
Dombestein, H., Norheim, A., & Lunde Husebo, A. M. (2019). Understanding informal caregivers' motivation from the perspective of self- determination theory: an integrative review. Scandinavian Journal of Caring Science, 34(2), 267-279.
Doolen, J. (2017). Meta-Analysis, Systematic, and Integrative Reviews: An Overview. Clinical Simulation in Nursing, 13(1), 28-30.
Daatland, S. O., Veenstra, M., & Lima, I. A. (2010). Norwegian sandwiches. European Journal of Ageing, 7(4), 271-281.
Engedal, K., & Haugen, P. K. (2009). Demens: fakta og utfordringer: en lærebok. Forlaget Aldring og helse.
Epstein, R. M., & Hundert, E. M. (2002). Defining and Assessing Professional Competence. JAMA, 287(2), 226-235.
Eraut, M. (1998). Concepts of competence. Journal of Interprofessional Care, 12(2), 127-139.
Fangen, K. (2015). Ethical considerations - Qualitative methods. The Norwegian National Research Ethics Committees. https://www.forskningsetikk.no/en/resources/the-research-ethics- library/methods/qualitative-methods/
Fazio, S., Pace, D., Flinner, J., & Kallmyer, B. (2018). The Fundamentals of Person-Centered Care for Individuals With Dementia. The Gerontologist, 58, 10-19.
Frias, C. E., Garcia-Pascual, M., Montoro, M., Ribas, N., Risco, E., & Zabalegui, A. (2020). Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review. Journal of Advanced Nursing, 76(3), 787-802.
Frost, N. A., & Shaw, R. L. (2015). Evolving Mixed and Multimethod Approaches for Psychology. In S. N. Hesse-Biber & R. B. Johnson (Eds.), The Oxford handbook of multimethod and mixed methods research inquiry. Oxford University Press.
Fu, F., Zhao, H., Tong, F., & Chi, I. (2017). A Systematic Review of Psychosocial Interventions to Cancer Caregivers. Frontiers in Psychology, 8(834).
Gallagher-Thompson, D., Choryan Bilbrey, A., Apesoa-Varano, E. C., Ghatak, R., Kim, K. K., & Cothran, F. (2020). Conceptual Framework to Guide Intervention Research Across the Trajectory of Dementia Caregiving. The Gerontologist, 60, 29-40.
Garcia-Ptacek, S., Dahlrup, B., Edlund, A. K., Wijk, H., & Eriksdotter, M. (2019). The caregiving phenomenon and caregiver participation in dementia. Scandinavian Journal of Caring Science, 33(2), 255-265.
Gautun, H., & Bratt, C. (2017). Caring too much? Lack of public services to older people reduces attendance at work among their children.
European Journal of Ageing, 14(2), 155-166.
Gjøra, L., Kjelvik, G., Strand, B. H., Kvello-Alme, M., & Selbæk, G. (2020). Forekomst av demens i Norge [Report]. https://butikk.aldringoghelse.no/demens/forekomst-av-demens-i- norge
Gough, D., Thomas, J., & Oliver, S. (2012). Clarifying differences between review designs and methods. Systematic Reviews, 1(28).
Green, J. C. (2015). Preserving Distinctions within the Multimethod and Mixed Methods Research Merger. In S. N. Hesse-Biber & R. B. Johnson (Eds.), The Oxford handbook of multimethod and mixed methods research inquiry. Oxford University Press.
Greenwood, N., & Smith, R. (2019). Motivations for being informal carers of people living with dementia: a systematic review of qualitative literature. BMC Geriatrics, 19(1), 169.
Hanssen, H., & Sommerseth, R. (2015). Den familiære relasjonens betydning for pårørendes behov i møte med helsetjenesten. Nordisk Tidsskrift for Helseforskning, 10(2), 62-75.
Haugen, I. (2020). Constructions of user participation in home-based dementia care [PhD Thesis]. VID vitenskapelige høgskole.
Hengelaar, A. H., van Hartingsveldt, M., Wittenberg, Y., van Etten- Jamaludin, F., Kwekkeboom, R., & Satink, T. (2018). Exploring the collaboration between formal and informal care from the professional perspective: A thematic synthesis. Health & Social Care in the Community, 26(4), 474-485.
Henriksen, N., Moholt, J.-M., & Blix, B. H. (2020). Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions. Journal of Aging & Social Policy, 32(3), 260-275.
Hesse-Biber, S., Rodriguez, D., & Frost, N. A. (2015). A Qualitatively Driven Approach to Multimethod and Mixed Methods Research. In S. Hesse- Biber & R. B. Johnson (Eds.), The Oxford handbook of multimethod and mixed methods research inquiry. Oxford University Press.
Hesse-Biber, S. N., & Johnson, R. B. (2015). The Oxford handbook of multimethod and mixed methods research inquiry. Oxford University Press.
Hoffmann, F., & Rodrigues, R. (2010). Informal Carers: Who Takes Care of Them? [Report]. https://www.euro.centre.org/publications/detail/387
Holt Clemmensen, T., Hein Lauridsen, H., Andersen-Ranberg, K., & Kaae Kristensen, H. (2020). Informal carers' support needs when caring for a person with dementia - A scoping literature review. Scandinavian Journal of Caring Sciences, 0(0).
Hong, Q. N., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., Gagnon, M. P., Griffiths, F., Nicolau, B., O'Cathain, A., Rousseau,
M. C., Vedel, I., & Pluye, P. (2018). The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for Information, 34(4), 285-291.
Hunter, A., & Brewer, J. (2015). Designing Multimethod Research. In S. N. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry. Oxford: Oxford University Press, Incorporated.
Häikiö, K., Cloutier, D., & Rugkåsa, J. (2020). Is health literacy of family carers associated with carer burden, quality of life, and time spent on informal care for older persons living with dementia? PLoS ONE, 15(11), e0241982.
Jenhaug, L. M. (2018). Myndighetenes forventninger til pårørende som samprodusenter i omsorgstjenester. Tidsskrift for velferdsforskning, 21(1), 39-58.
Karlsson, S., Bleijlevens, M., Roe, B., Saks, K., Martin, M. S., Stephan, A., Suhonen, R., Zabalegui, A., Hallberg, I. R., & the RightTimeCarePlace, C. (2015). Dementia care in European countries, from the perspective of people with dementia and their caregivers. Journal of Advanced Nursing, 71(6), 1405-1416.
Kim, Y., Carver, C., & Cannady, R. (2015). Caregiving Motivation Predicts Long-Term Spirituality and Quality of Life of the Caregivers. Annals of Behavioral Medicine, 49(4), 500-509.
Kim, Y., Carver, C. S., Deci, E. L., & Kasser, T. (2008). Adult attachment and psychological well-being in cancer caregivers: the mediational role of spouses' motives for caregiving. Health Psychology, 27(2), 144-154. https://doi.org/10.1037/0278-6133.27.2
Kindt, S., Vansteenkiste, M., Cano, A., & Goubert, L. (2017). When is your partner willing to help you? The role of daily goal conflict and perceived gratitude. Motivation and Emotion, 41(6), 671-682.
Kindt, S., Vansteenkiste, M., Loeys, T., Cano, A., Lauwerier, E., Verhofstadt, L. L., & Goubert, L. (2015). When Is Helping your Partner with Chronic Pain a Burden? The Relation Between Helping Motivation and Personal and Relational Functioning. Pain Med, 16(9), 1732- 1744.
Kindt, S., Vansteenkiste, M., Loeys, T., & Goubert, L. (2016). Helping motivation and well-being of chronic pain couples. PAIN, 157(7), 1551-1562.
Kitwood, T., Høeg, D., & Johnsen, N. (1999). En revurdering af demens: personen kommer i første række. Dafolo.
Krueger, R. A., & Casey, M. A. (2015). Focus groups: a practical guide for applied research (5th ed.). Sage.
Kvale, S., & Brinkmann, S. (2009). Interviews: learning the craft of qualitative research interviewing (2nd ed.). Sage.
Laparidou, D., Middlemass, J., Karran, T., & Siriwardena, A. N. (2018). Caregivers' interactions with health care services - Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia - A qualitative study. Dementia, 18(7-8), 2526-2542.
Larsen, L. S. S. (2017). Speaking in behalf of the person with dementia in home-based care. A qualitative study of collaboration between formal and family caregivers in Sami and Norwegian municipalities [PhD Thesis]. The Arctic University of Norway.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer.
Lillemyr, O. F. (2016). Motivasjon og selvforståelse: hva ligger bak det vi gjør? (3rd ed.). Universitetsforlaget.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage. Lincoln, Y. S., & Guba, E. G. (2003). Paradigmatic Controversies,
Contradictions, and Emerging Confluences. In N. K. Denzin & Y. S. Lincoln (Eds.), The Landscape of qualitative research: theories and issues (2nd ed., p. 253-291). Sage.
Lloyd, J., Patterson, T., & Muers, J. (2016). The positive aspects of caregiving in dementia: A critical review of the qualitative literature. Dementia, 15(6), 1534-1561.
Locke, E. A. (1968). Toward a theory of task motivation and incentives. Organizational Behavior and Human Performance, 3(2), 157-189.
Lyonette, C., & Yardley, L. (2003). The influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient. Ageing & Society, 23, 487-506. https://doi.org/10.1017/S0144686x03001284
Macleod, A., Tatangelo, G., McCabe, M., & You, E. (2017). "There isn't an easy way of finding the help that's available." Barriers and facilitators of service use among dementia family caregivers: a qualitative study. International Psychogeriatrics, 29(5), 765-776. https://doi.org/10.1017/S1041610216002532
Magnusson, L., & Hanson, E. (2004). Working with Older People and Their Carers to Research and Develop Responsive ICT Support Services. Health Informatics Journal, 10(1), 83-88. https://doi.org/10.1177/1460458204040673
Malterud, K. (2002). Reflexivity and metapositions: strategies for appraisal of clinical evidence. Journal of Evaluation in Clinical Practice, 8(2), 121-126. https://doi.org/10.1046/j.1365-2753.2002.00353.x
Malterud, K. (2012a). Fokusgrupper som forskningsmetode for medisin og helsefag. Universitetsforlaget
Malterud, K. (2012b). Systematic text condensation: A strategy for qualitative analysis. Scandinavian Journal of Public Health, 40(8), 795-805.
Malterud, K. (2019). Qualitative metasynthesis: a research method for medicine and health sciences. Routledge.
Malterud, K., Siersma, V. D., & Guassora, A. D. (2016). Sample Size in Qualitative Interview Studies: Guided by Information Power. Qualitative Health Research, 26(13), 1753-1760.
Meld. St. 14. (2020-2021). Long-term Perspectives on the Norwegian Economy 2021. In Norwegian: Perspektivmeldingen 2021 (Meld. St. 14,). https://www.regjeringen.no/no/dokumenter/meld.-st.-14-20202021/id2834218/
Meld. St. 15. (2017-2018). A full life - all your life - A Quality Reform for Older Persons. In Norwegian: Leve hele livet - En kvalitetsreform for eldre Ministry of Health and Care Services. https://www.regjeringen.no/en/dokumenter/meld.-st.-15- 20172018/id2599850/
Meld. St. 29. (2012-2013). Future Care. In Norwegian: Morgendagens omsorg (Meld. St. 29). https://www.regjeringen.no/en/dokumenter/meld.-st.-29-2012- 2013/id723252/
Milyavskaya, M., & Koestner, R. (2011). Psychological needs, motivation, and well-being: A test of self-determination theory across multiple domains. Personality and Individual Differences, 50(3), 387-391.
Ministries. (2020). Ministry of Health and Care Services, Ministry of Labour and Social Affairs, Ministry of Children and Families, Ministry of Culture, Ministry of Local Government and Modernisation. Family caregivers strategy 2021-2025. In Norwegian: Vi - de pårørende Regjeringens pårørendestrategi og handlingsplan 2021-2025 https://www.regjeringen.no/contentassets/08948819b8244ec893d90a6 6deb1aa4a/vi-de-parorende.pdf
Ministry of Health and Care Services (MHCH). (2015). Dementia Plan 2020 - A more dementia-friendly society. In Norwegian: Demensplan 2020 - Et mer demensvennlig samfunn. https://www.regjeringen.no/contentassets/3bbec72c19a04af88fa78ffb 02a203da/dementia_-plan_2020_long.pdf
Ministry of Health and Care Services (MHCH). (2020). Dementia Plan 2025. In Norwegian: Demensplan 2025. https://www.regjeringen.no/no/dokumenter/demensplan- 2025/id2788070/
Moher, D., Liberati, A., Tetzlaff, J., & Altman, D. (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLOS Medicine, 6(7).
Moholt, J.-M. (2019). Utilization of community healthcare services and family caregivers' needs for support. A survey of family caregivers for older, home-dwelling persons with dementia in Northern Norway [PhD Thesis]. The Arctic University of Norway.
Moholt, J.-M., Friborg, O., Blix, B. H., & Henriksen, N. (2018). Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway. Dementia, 19(5), 1712-1731.
Moholt, J.-M., Friborg, O., Henriksen, N., Hamran, T., & Blix, B. H. (2020). Non-use of community health-care services - an exploratory cross- sectional study among family care-givers for older, home-dwelling persons with dementia. Ageing and Society, 0(0), 1-25.
Moniz Cook, E. D., Swift, K., James, I., Malouf, R., De Vugt, M., & Verhey, F. (2012). Functional analysis-based interventions for challenging behaviour in dementia. Cochrane Database of Systematic Reviews, 2, Art. No.: CD006929.
Morgan, D. L. (1997). Focus groups as qualitative research (2nd ed.). Thousand Oaks, C.A.: SAGE Publications.
Morse, J. M. (2011). What is qualitative health research? In N. K. Denzin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (4th ed., p. 401-414). Sage.
Morse, J. M. (2015). Issues in Qualitatively-Driven Mixed-Method Designs: Walking Through a Mixed-Method Project. In S. N. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry. Oxford: Oxford University Press, Incorporated.
Morse, J. M. (2017). Essentials of qualitatively-driven mixed-method designs. (14th ed.). Routledge.
Morse, J. M., & Niehaus, L. (2009). Mixed method design: principles and procedures (4th ed.). Left Coast Press.
Maayan, N., Soares-Weiser, K., & Lee, H. (2014). Respite care for people with dementia and their carers. Cochrane Database of Systematic Reviews(1), Art. No.: CD004396.
Ng, H. Y., Griva, K., Lim, H. A., Tan, J. Y., & Mahendran, R. (2016). The burden of filial piety: A qualitative study on caregiving motivations amongst family caregivers of patients with cancer in Singapore. Psychology & Health, 31(11), 1293-1310.
Ng, J. Y., Ntoumanis, N., Thogersen-Ntoumani, C., Deci, E. L., Ryan, R. M., Duda, J. L., & Williams, G. C. (2012). Self-Determination Theory Applied to Health Contexts: A Meta-Analysis. Perspectives on Psychological Science, 7(4), 325-340.
Niemiec, C. P., Soenens, B., & Vansteenkiste, M. (2014). Is Relatedness Enough? On the Importance of Need Support in Different Types of Social Experiences. In N. Weinstein (Ed.), Human Motivation and Interpersonal Relationships: Theory, Research, and Applications. Springer Netherlands: Imprint: Springer.
Nolan, M., Brown, J., Davies, S., Nolan, J., & Keady, J. (2006). The SENSES framework: Improving care for older people through a relationship- centred approach. Getting Research Into Practice (GRiP) Report No. 2. https://core.ac.uk/download/pdf/99946.pdf
Nolan, M., Davies, N., & Grant, G. (2001). Working with older people and their families. GB: Open University Press.
Nolan, M., Davies, S., Brown, J., Keady, J., & Nolan, J. (2004). Beyond 'person-centred' care: a new vision for gerontological nursing. Journal of Clinical Nursing, 13(1), 45-53.
Nolan, M., Grant, G., & Keady, J. (1996). Understanding family care: a multidimensional model of caring and coping. Open university press.
Nolan, M., Lundh, U., Grant, G., & Keady, J. (2003). Partnerships in Family Care. McGraw-Hill Education.
Nolan, M., Ryan, T., Enderby, P., & Reid, D. (2002). Towards a More Inclusive Vision of Dementia Care Practice and Research. Dementia, 1(2), 193-211.
Nordtug, B. (2011). Caring burden of cohabitants living with partners suffering from chronic obstructive pulmonary disease or dementia [PhD Thesis]. NTNU Trondheim.
Norwegian Directorate of Health. (2018). The Norwegian national guidelines for dementia care. In Norwegian: Nasjonal faglig retningslinje om demens. https://www.helsedirektoratet.no/retningslinjer/demens
Norwegian Directorate of Health. (2019). The National Guidelines about Caregivers in the Healt Care Services. In Norwegian: Veileder om pårørende i helse- og omsorgstjenesten https://www.helsedirektoratet.no/veiledere/parorendeveileder
Norwegian Directorate of Health. (2021). National caregiver survey. In Norwegian: Nasjonal pårørendeundersøkelseen - fra Opinion for Helsedirektoratet. https://www.helsedirektoratet.no/nyheter/nasjonal- parorendeundersokelse
Norwegian Health Association. (2020). What is Dementia? In Norwegian: Hva er demens?. Retrieved 22 December from https://nasjonalforeningen.no/demens/hva-er-demens/
Ntoumanis, N., Ng, J. Y. Y., Prestwich, A., Quested, E., Hancox, J. E., Thøgersen-Ntoumani, C., Deci, E. L., Ryan, R. M., Lonsdale, C., & Williams, G. C. (2020). A meta-analysis of self-determination theory- informed intervention studies in the health domain: effects on motivation, health behavior, physical, and psychological health. Health Psychology Review, 1-31.
OECD, Organisation for Economic Co-operation and Development. (2018). Care Needed - Improving the Lives of People with Dementia (OECD Health Policy Studies, Issue. http://www.oecd.org/health/care-needed- 9789264085107-en.htm
Overgaard, D., & Bovin, J. S. (2014). Hvordan bliver forskning i sygepleje bedre med NVivo? Nordisk sygeplejeforskning, 4(3), 241-250. http://www.idunn.no/nsf/2014/03/hvordan_bliver_forskning_i_sygepl eje_bedre_med_nvivo
Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the Stress Process: An Overview of Concepts and Their Measures. The Gerontologist, 30(5), 583 - 594.
Pierce, T., Lydon, J. E., & Yang, S. (2001). Enthusiasm and Moral Commitment: What Sustains Family Caregivers of Those With Dementia. Basic & Applied Social Psychology, 23(1), 29-41.
Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in- law as caregivers of older adults: a meta-analytic comparison. Psychol Aging, 26(1), 1-14.
Pluye, P., Gagnon, M.-P., Griffiths, F., & Johnson-Lafleur, J. (2009). A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in Mixed Studies Reviews. International Journal of Nursing Studies, 46(4), 529-546.
Polit, D. F., & Beck, C. T. (2018). Essentials of nursing research: appraising evidence for nursing practice (9th ed.). Wolters Kluwer.
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer's & Dementia, 9(1), 63-75.
QSR International. (2019). NVIVO 12 for Windows. NVIVO Web Page. Retrieved 10. October from https://qsrinternational.com/nvivo/home
Quinn, C., Clare, L., & Woods, R. T. (2010). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review. International Psychogeriatrics, 22(1), 43-55.
Quinn, C., Clare, L., & Woods, R. T. (2012). What predicts whether caregivers of people with dementia find meaning in their role? International Journal of Geriatric Psychiatry, 27(11), 1195-1202.
Quinn, C., Clare, L., & Woods, R. T. (2015). Balancing needs: The role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia. Dementia, 14(2), 220- 237.
Reeve, J. (2018). Understanding motivation and emotion (Seventh edition). John Wiley.
Reilly, S., Miranda‐Castillo, C., Malouf, R., Hoe, J., Toot, S., Challis, D., & Orrell, M. (2015). Case management approaches to home support for people with dementia. Cochrane Database of Systematic Reviews(1).
Ribeiro, O., Brandão, D., Oliveira, A. F., Teixeira, L., & Paúl, C. (2020). Positive aspects of care in informal caregivers of community-dwelling dementia patients. Journal of Psychiatric and Mental Health Nursing, 27(4), 330-341.
Rigby, C. S., & Ryan, R. M. (2018). Self-Determination Theory in Human Resource Development: New Directions and Practical Considerations. Advances in Developing Human Resources, 20(2), 133-147.
Robson, C. (2002). Real world research: a resource for social scientists and practitioner-researchers (2nd ed.). Blackwell.
Romain, A. J., Bernard, P., Akrass, Z., St-Amour, S., Lachance, J.-P., Hains- Monfette, G., Atoui, S., Kingsbury, C., Dubois, E., Karelis, A. D., & Abdel-Baki, A. (2020). Motivational theory-based interventions on health of people with several mental illness: A systematic review and meta-analysis. Schizophrenia Research, 222, 31-41.
Romero-Moreno, R., Márquez-González, M., Losada, A., & López, J. (2011). Motives for caring: relationship to stress and coping dimensions. International Psychogeriatrics, 23(4), 573-582.
Roth, D. L., Fredman, L., & Haley, W. E. (2015). Informal caregiving and its impact on health: a reappraisal from population-based studies.
Gerontologist, 55(2), 309-319. https://doi.org/10.1093/geront/gnu177 Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55(1), 68-78.
Ryan, R. M., & Deci, E. L. (2017). Self-determination theory: basic psychological needs in motivation, development, and wellness. Guilford Press.
Ryan, R. M., & Deci, E. L. (2019). Chapter Four - Brick by Brick: The Origins, Development, and Future of Self-Determination Theory. In A. J. Elliot (Ed.), Advances in Motivation Science (6th ed., p. 111- 156). Elsevier.
Sansone, C., & Harackiewicz, J. M. (2000). Intrinsic and Extrinsic Motivation: The Search for Optimal Motivation and Performance. Elsevier Science & Technology. http://ebookcentral.proquest.com/lib/uisbib/detail.action?docID=3136 71
Schoenmakers, B., Buntinx, F., & Delepeleire, J. (2010). Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review. Maturitas, 66, s191-200.
Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family Caregiving for Older Adults. Annu Rev Psychol, 71, 635-659.
Skogli, E., Karttinen, E., Stokke, O., & Vikøren, S. (2020a). Alzheimers og annen demenssykdom utredning og behandling (NR. 63/2020). MENON. https://www.menon.no/wp-content/uploads/2020-63- Alzheimers-og-annen-demenssykdom-utredning-og-behandling.pdf
Skogli, E., Karttinen, E., Stokke, O., & Vikøren, S. (2020b). Samfunnskostnader knyttet til alzheimers og annen demenssykdom (NR 64/2020). MENON. https://www.menon.no/wp- content/uploads/2020-64-Samfunnskostnader-knyttet-til-Alzheimers- og-annen-demenssykdom.pdf
Statistics Norway. (2020). Educational attainment of the population. Retrieved 12 August from https://www.ssb.no/en/utdanning/statistikker/utniv
Strekalova, Y. A. (2016). Finding Motivation: Online Information Seeking Following Newborn Screening for Cystic Fibrosis. Qualitative Health Research, 26(9), 1180-1190.
Sullivan, A. B., & Miller, D. (2015). Who is Taking Care of the Caregiver? Journal of Patient Experience, 2(1), 7-12.
Svendsboe, E., Terum, T., Testad, I., Aarsland, D., Ulstein, I., Corbett, A., & Rongve, A. (2016). Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer's disease. International Journal of Geriatric Psychiatry, 31(9), 1075-1083.
Tan-Ho, G., Choo, P. Y., Patinadan, P. V., Low, C. X., & Ho, A. H. Y. (2020). Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of- life caregiving among Asian family caregivers. BMC Palliative Care, 19(1), 132.
Tatangelo, G., McCabe, M., Macleod, A., & You, E. (2018). "I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study. International Journal of Nursing Studies, 77, 8-14.
Terum, T. M., Testad, I., Rongve, A., Aarsland, D., Svendsboe, E., & Andersen, J. R. (2019). The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress. International Journal of Geriatric Psychiatry, 34(10), 1421-1428.
Teshuva, K., Cohen-Mansfield, J., Iecovich, E., & Golander, H. (2019). Like one of the family? Understanding relationships between migrant live- in care workers and older care recipients in Israel. Ageing and Society, 39(7), 1387-1408.
The Health Personnel Act. (1999). Act of 2 July 1999 No. 64 relating to Health Personnel etc. In Norwegian: Lov 2. juli 1999 nr. 64 Lov om helsepersonell m.v. (helsepersonelloven), https://lovdata.no/dokument/NL/lov/1999-07-02-64?q=helsepersonell%20loven
The Municipal Health Services Act. (2011). Act of 24 June 2011 No. 30 relating to Municipal Health and Care Services. In Norwegian: Lov 24. juni 2011 nr. 30. Lov om kommunale helse- og omsorgstjenester m.m. (helse- og omsorgstjenesteloven), https://lovdata.no/dokument/NL/lov/2011-06-24-30
The Patients and User Rights Act. (1999). Act of 2 July 1999 No. 63 relating to Patients and User Rights. In Norwegian: LOV-1999-07-02- nr. 63. Lov om pasient- og brukerrettigheter (pasient- og brukerrettighetsloven), https://lovdata.no/dokument/NL/lov/1999-07- 02-63
The World Medical Association. (2008). Ethical principles for medical research involving human subjects. In Declaration of Helsinki, Seoul. Retrieved 10.07.2020 from https://www.wma.net/what-we- do/medical-ethics/declaration-of-helsinki/
Tong, A., Craig, J., & Sainsbury, P. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19(6), 349-357.
Tretteteig, S., Thorsen, K., & Mork Rokstad, A. M. (2019). Pårørendes erfaringer av kvalitet i helse- og omsorgstjenester til personer med demens og pårørende. En longitudinell narrativ studie. Tidsskriftet aldring og helse 23(4), 56-64. https://www.aldringoghelse.no/ah- archive/documents/P%C3%A5r%C3%B8rendes_erfaringer_av_kvalit et_i_helse-_og_omsorgstjenester_til_personer_med_demens.pdf
Tretteteig, S., Vatne, S., & Mork Rokstad, A. M. (2016). The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature. Aging & Mental Health, 20(5), 450-462.
Tretteteig, S., Vatne, S., & Mork Rokstad, A. M. (2017a). The influence of day care centres designed for people with dementia on family caregivers - a qualitative study. BMC Geriatrics, 17(1), 5.
Tretteteig, S., Vatne, S., & Mork Rokstad, A. M. (2017b). Meaning in family caregiving for people with dementia: a narrative study about relationships, values, and motivation, and how day care influences these factors. Journal of Multidisciplinary Healthcare, 10, 445-455.
Ugreninov, E. (2013). Offspring in Squeeze: Health and Sick Leave Absence among Middle-aged Informal Caregivers. Journal of Population Ageing, 6(4), 323-338.
Ulstein, I. (2007). Dementia in the family [PhD Thesis]. Universitetet i Oslo, Det medisinske fakultet. Oslo.
Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Sciences, 15(3), 398-405.
van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J., & Dröes, R.-M. (2014). Multivariate models of subjective caregiver burden in dementia: A systematic review. Ageing Research Reviews, 15, 76-93.
Vangen, H. (2020). The Impact of Informal Caregiving on Labour Supply Before and After a Parent's Death. Journal of Population Ageing.
Vossius, C., Selbæk, G., Ydstebø, A. E., Benth, J. S., Godager, G., Lurås, H., & Bergh, S. (2015). Ressursbruk og sykdomsforløp ved demens (REDIC) langversjon. https://sykehuset- innlandet.no/Documents/REDIC_Rapport_Fullversjon.pdf
Vroom, V. H. (1964). Work and motivation. New York, NY: Wiley.
Watson, J. (2016). Developing the Senses Framework to support relationship- centred care for people with advanced dementia until the end of life in care homes. Dementia, 18(2), 545-566.
Weinstein, N., & Ryan, R. M. (2010). When helping helps: autonomous motivation for prosocial behavior and its influence on well-being for the helper and recipient. Journal of Personality and Social Psychology, 98(2), 222-244.
Wennerberg, M. M., Eriksson, M., Danielson, E., & Lundgren, S. M. (2016). Unravelling Swedish informal caregivers' Generalised Resistance Resources. Scandinavian Journal of Caring Science, 30(3), 602-613.
White, R. W. (1959). Motivation reconsidered: The concept of competence. Psychological Review, 66(5), 297-333.
Whittemore, R., Chao, A., Jang, M., Minges, K. E., & Park, C. (2014).
Methods for knowledge synthesis: An overview. Heart & Lung: The Journal of Acute and Critical Care, 43(5), 453-461.
Whittemore, R., & Knafl, K. (2005). The integrative review: updated methodology. Journal of Advanced Nursing, 52(5), 546-553.
WHO, World Health Organization. (2016). Framework on integrated people- centred health services. Retrieved 13.12.2020 from https://www.who.int/servicedeliverysafety/areas/people-centred- care/framework/en/
WHO, World Health Organization. (2019). International Classification of Diseases, ICD-10 Version:2019. https://icd.who.int/browse10/2019/en#/F00-F09
WHO, World Health Organization. (2020). Dementia - Key facts. Retrieved 01.12. from https://www.who.int/news-room/fact- sheets/detail/dementia
Williams, G. C. (2014). Self-Determination and the Patient-Health Practitioner Relationship. In N. Weinstein (Ed.), Human Motivation and Interpersonal Relationships: Theory, Research, and Applications. Springer Netherlands: Imprint: Springer.
Williams, G. C., Frankel, R. M., Campbell, T. L., & Deci, E. L. (2000). Research on relationship-centered care and healthcare outcomes from the Rochester biopsychosocial program: A self-determination theory integration. Families, Systems, & Health, 18(1), 79-90.
Williams, G. C., Halvari, H., Niemiec, C. P., Sorebo, O., Olafsen, A. H., & Westbye, C. (2014). Managerial support for basic psychological needs, somatic symptom burden and work-related correlates: A self- determination theory perspective. Work and Stress, 28(4), 404-419.
Ydstebø, A. E., Benth, J. Š., Bergh, S., Selbæk, G., & Vossius, C. (2020). Informal and formal care among persons with dementia immediately before nursing home admission. BMC Geriatrics, 20(1), 296.
Yu, D. S. F., Cheng, S. T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1-26.
Yuen, E. Y. N., Knight, T., Ricciardelli, L. A., & Burney, S. (2018). Health literacy of caregivers of adult care recipients: A systematic scoping review. Health & Social Care in the Community, 26(2), 191-206.
Zahed, S., Emami, M., Bazargan-Hejazi, S., Eslami, A. A., Barekatain, M., & Zamani-Alavijeh, F. (2019). What motivates informal caregivers of people with dementia (PWD): a qualitative study. BMC Palliative Care, 18(1), 105.
Zarit, S. H. (2012). Positive aspects of caregiving: More than looking on the bright side. Aging & Mental Health, 16(6), 673-674.
Zigante, V. (2018). Informal care in Europe, Exploring Formalisation, Availability and Quality. [Report]. https://ec.europa.eu/social/main.jsp?catId=738&langId=en&pubId=81 06&type=2&furtherPubs=no
Øydgard, G. W. (2018). Forhandlinger i omsorg. En institusjonell etnografi om pårørendes omsorgsarbeid og tilgang til helse- og omsorgstjenester [PhD Thesis]. Nord Universitet.
Aasgaard, H. S., Disch, P. G., Fagerström, L., & Landmark, B. T. (2014). Pårørende til aleneboende personer med demens - Erfaringer fra samarbeid med hjemmetjenesten etter ny organisering. Nordisk sygeplejeforskning, 4(2), 114-128. http://www.idunn.no/nsf/2014/02/paaroerende_til_aleneboende_perso ner_med_demens_-_erfaringer_