Oulun ammattikorkeakoulu
ePooki 54/2018

Sense of security of home-dwelling people with an early stage memory disorder: a qualitative study

Metatiedot

Nimeke: Sense of security of home-dwelling people with an early stage memory disorder: a qualitative study

Tekijä: Nikula Anna-Leena; Pesonen Hanna-Mari; Elo Satu

Aihe, asiasanat: ikääntyneet, kotona asuminen, kvalitatiivinen tutkimus, muistisairaat, muistisairaudet, turvallisuus, turvattomuus, home-dwelling, memory disorders, security, qualitative research

Tiivistelmä: The sense of security in home-dwelling people with an early stage memory disorder substantially affects their well-being and quality of life and also threatens their management of everyday life and living at home. The aim of this study was to describe what creates a sense of security in home-dwelling people with an early stage memory disorder. This was a qualitative study: interviews (n=15) were conducted with people with a diagnosed early stage memory disorder (n=10), family members (n=3), and nurses (n=2). A qualitative content analysis was used to analyze the data. Three factors affecting the sense of security were identified: health and daily functioning, features of the physical and social environment, and the psycho-social resources of an individual. By recognizing the factors affecting the sense of security, this knowledge could be utilized by health care workers to support the sense of security and to design health care services individually for home-dwelling people with a memory disorder.

Julkaisija: Oulun ammattikorkeakoulu, Oamk

Aikamääre: Julkaistu 2018-11-06

Pysyvä osoite: http://urn.fi/urn:nbn:fi-fe2018101938502

Kieli: englanti

Suhde: http://urn.fi/URN:ISSN:1798-2022, ePooki - Oulun ammattikorkeakoulun tutkimus- ja kehitystyön julkaisut

Oikeudet: CC BY-NC-ND 4.0

Näin viittaat tähän julkaisuun

Nikula, A-L., Pesonen, H-M. & Elo, S. 2018. Sense of security of home-dwelling people with an early stage memory disorder: a qualitative study. ePooki. Oulun ammattikorkeakoulun tutkimus- ja kehitystyön julkaisut 54. Hakupäivä 14.11.2018. http://urn.fi/urn:nbn:fi-fe2018101938502.

Progressive memory disorder affects people's independent functioning in life, thus threatening their safe living at home. A key goal in Finnish social and health policy is to promote older people’s possibilities for accessible and safe living at home for as long as possible by improving home care for older people and enhancing support for informal caregivers. A wider range of adequate home care services are needed to help people with a memory disorder to continue living in their own homes safely. The purpose of this qualitative study is to describe, what creates the sense of security for home-dwelling people diagnosed with an early stage memory disorder. 

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Backround

The prevalence of memory disorders is increasing worldwide due to the aging of the population. Progressive memory disorder affects patients’ cognitive functions, thus impairing their independent functioning in life World Health Organization & Alzheimer’s Disease International. 2012. Dementia: a public health priority. Cited January 8th 2017. http://www.who.int/mental_health/publications/dementia_report_2012/en/. This in turn threatens their safe living at home Black, B.S., Johnston, D., Rabins, P.V., Morrison, A., Lyketsos, C. & Samus, Q.M. 2013. Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study. Journal of the American Geriatrics Society 61 (12), 2087-2095.. The majority of those living with a memory disorder live in their own home in the community and would wish to remain living there for as long as possible. Although caring for a person with a memory disorder is not the responsibility solely of the family members, they have a crucial supportive role for the person diagnosed World Health Organization & Alzheimer’s Disease International. 2012. Dementia: a public health priority. Cited January 8th 2017. http://www.who.int/mental_health/publications/dementia_report_2012/en/. Meeting the needs for care, services and support of both people with the diagnosis and their family caregivers is necessary in order to promote safe living and good quality of life with a memory disorder Alzheimer's Disease International. 2016. World Alzheimer report 2016. Improving healthcare of people living with dementia. Coverage, quality and costs now and in the future. Cited February 8th 2017. https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf.

There is a need for new models of health care services that are continuous, holistic and integrated Alzheimer's Disease International. 2016. World Alzheimer report 2016. Improving healthcare of people living with dementia. Coverage, quality and costs now and in the future. Cited February 8th 2017. https://www.alz.co.uk/research/WorldAlzheimerReport2016.pdf, rehabilitative, tailored, timely and coordinated Ministry of Social Affairs and Health. 2013. National Memory Programme 2012–2020. Creating a "memory-friendly" Finland. Reports and Memorandums of the Finnish Ministry of Social Affairs and Health 2013:9. Cited January 2nd 2017. http://urn.fi/URN:ISBN:978-952-00-3286-9, and support the quality of life of people with the memory disorder and their families World Health Organization & Alzheimer’s Disease International. 2012. Dementia: a public health priority. Cited January 8th 2017. http://www.who.int/mental_health/publications/dementia_report_2012/en/. A key goal in Finnish social and health policy is to promote older people’s possibilities for accessible and safe living at home for as long as possible by improving home care for older people and enhancing support for informal caregivers Ministry of Social Affairs and Health. 2013. Quality recommendation to guarantee a good quality of life and improved services for older persons. Publications of the Ministry of Social Affairs and Health 2013:19. Cited January 2nd 2017. http://urn.fi/URN:ISBN:978-952-00-3443-6 Ministry of Social Affairs and Health. 2016. Kärkihanke: Kehitetään ikäihmisten kotihoitoa ja vahvistetaan kaikenikäisten omaishoitoa – hankesuunnitelma. Reports and Memorandums of the Finnish Ministry of Social Affairs and Health 2016:41. Cited February 8th 2017. http://urn.fi/URN:ISBN:978-952-00-3823-6. In Finland, there is an urgent need to reform care services towards supportive home care Finne-Soveri, H., Kuusterä, K., Tamminen, A., Heimonen, S., Lehtonen, O. & Noro, A. 2015. Muistibarometri 2015 ja RAI-tietoa kansallisen muistiohjelman tueksi. National Institute for Health and Welfare (THL). Report 2015:17. Cited Febryary 8th 2017. http://urn.fi/URN:ISBN:978-952-302-565-3. A wider range of adequate home care services are needed to help people with a memory disorder to continue living in their own homes safely Ministry of Social Affairs and Health. 2013. National Memory Programme 2012–2020. Creating a "memory-friendly" Finland. Reports and Memorandums of the Finnish Ministry of Social Affairs and Health 2013:9. Cited January 2nd 2017. http://urn.fi/URN:ISBN:978-952-00-3286-9 Finne-Soveri, H., Kuusterä, K., Tamminen, A., Heimonen, S., Lehtonen, O. & Noro, A. 2015. Muistibarometri 2015 ja RAI-tietoa kansallisen muistiohjelman tueksi. National Institute for Health and Welfare (THL). Report 2015:17. Cited Febryary 8th 2017. http://urn.fi/URN:ISBN:978-952-302-565-3.

Different contextual, emotional and individual factors contribute to a sense of security for older people Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63. Lanne, M. 2013. Käsityksiä kotona asuvan ikäihmisen turvallisuuteen liittyvistä tarpeista ja palveluista. Gerontologia 27 (3), 262–276.. The concept of the sense of security has a long historical background. According to Maslow's Maslow, AH. 1943. A theory of Human Motivation. Originally published in Psychological Review. 50 (4), 370–396. Cited November 27th 2016. http://psychclassics.yorku.ca/Maslow/motivation.htm hierarchy of needs theory, security is the state of being secure, specifically the freedom from fear, danger, risk, care, poverty, and anxiety. There are earlier studies concerning the sense of security for older people in general. Feeling a sense of security is a key issue in ensuring older people´s independence, social inclusion, and social participation Ministry of Social Affairs and Health. 2013. Quality recommendation to guarantee a good quality of life and improved services for older persons. Publications of the Ministry of Social Affairs and Health 2013:19. Cited January 2nd 2017. http://urn.fi/URN:ISBN:978-952-00-3443-6. Older people's sense of security is strongly related to secure relationships Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63. Fagerström, L., Gustafson, Y., Jakobsson, G., Johansson, S. & Vartiainen, P. 2011. Sense of Security among people aged 65 and 75: External and inner sources of security. Journal of Advanced Nursing 67 (6), 1305–1315. doi: 10.1111/j.1365-2648.2010.05562.x, perceived health, sense of control and knowledge about their everyday life situations Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63., and economic security Fagerström, L., Gustafson, Y., Jakobsson, G., Johansson, S. & Vartiainen, P. 2011. Sense of Security among people aged 65 and 75: External and inner sources of security. Journal of Advanced Nursing 67 (6), 1305–1315. doi: 10.1111/j.1365-2648.2010.05562.x. The sense of security is a subjective feeling adapted to one's own needs, self-confidence, and sense of belonging and being liked James, I., Ardeman-Merten, R. & Kihlgren, A. 2014. Ontological Security in Nursing Homes for Older Persons – Person Centred Care is the Power of Balance. The Open Nursing Journal 8, 79–87.. Meaningfulness in life and the ability to master crises indicate an older person’s subjective feeling of security Fagerström, L., Gustafson, Y., Jakobsson, G., Johansson, S. & Vartiainen, P. 2011. Sense of Security among people aged 65 and 75: External and inner sources of security. Journal of Advanced Nursing 67 (6), 1305–1315. doi: 10.1111/j.1365-2648.2010.05562.x. The sense of security in older people is associated with satisfaction with the home and living environment De Donder, L., Buffel, T., Dury, S., et al. 2013. Perceptual quality of neighborhood and feelings of unsafety. Ageing and Society 33, 917–937., physical activity Brown, BB., Werner, CM., Amburgey, JW. et al. 2007. Walkable route perceptions and physical features: Converging evidence for en route walking experiences. Environment & Behavior 39 (1), 34–61., and quality of life Buffel, T., Verté, D., De Donde, L. et al. 2013. Theorizing the relationship between older people and their immediate social living environment. International Journal of Lifelong Education 31 (1), 13–32.. An environment supporting the well-being of the home-dwelling older person is formed of physical, social, and symbolic attributes that relate to the experienced sense of security Elo, S., Saarnio, R. & Isola, A. 2011. The physical, social and symbolic environment supporting the well-being of home-dwelling elderly people. International Journal of Circumpolar Health 70 (1), 90–100. Elo, S., Kääriäinen, M., Isola, A. et al. 2013. Developing and testing a middle-range theory of the well-being supportive physical environment of home-dwelling elderly. The Scientific World Journal.. However, the sense of security has also been connected to suffering in older people´s lives, such as a fear of the unknown, physical pain, and anxiety Mollon, D. 2013. Feeling safe during an inpatient hospitalization: a concept analysis. Journal of Advanced Nursing 70 (8), 1727–1737., and fear of crime Acierno, R., Rheingold, AA., Resnick, HS. et al. 2004. Predictors of fear of crime on older adults. Anxienty Disorders 18 (3), 385–396.. The concept of security has been evaluated from the risk perspective, such as the risk of falling Bloch, F., Thibaud, M., Tournoux-Facon, C. et al. 2012. Estimation of the risk factors for falls in the elderly: can meta-analysis provide a valid answer? Geriatrics Gerontology International 13 (2), 250–263., the problems of medical treatment Fried, T., O'Leary, J., Towle, V. et al. 2014. Health Outcomes Associated with Polypharmacy in Community-Dwelling Older Adults: A Systematic Review. Journal of the American Geriatrics Society 62 (12), 2261–2272., and the risk of injuries and accidents Ho, WS., Ying, SY. & Chan, HH. 2001. A study of burn injuries in the elderly in a regional burn centre. Burns 27 (4), 382–385..

Research strategy

Study participants were home-dwelling people with a diagnosed early stage memory disorder (n=10). They were from 43 to 78 years of age. Participants were selected by purposeful sampling through the Memory Association of the Oulu Region. Family members (n=3) and nurses (n=2) were included in the study, as we wanted to have a supplementary understanding from their viewpoints. 

Data were collected using individual semi-structured interviews in the homes of the study participants between April and May 2016 by the first author. Nurses were interviewed at their workplace. The attributes of the physical, social, and symbolical environment Elo, S., Saarnio, R. & Isola, A. 2011. The physical, social and symbolic environment supporting the well-being of home-dwelling elderly people. International Journal of Circumpolar Health 70 (1), 90–100. formed the broad themes for the interviews. All interviews were digitally recorded and transcribed verbatim. Interviews lasted 40-60 minutes. The data were analyzed using inductive content analysis by the first author Graneheim, UH. & Lundman, B. 2004. Qualitive content analysis in Nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today 24 (2), 105–112. Elo, S. & Kyngäs, H. 2008. The qualitative content analysis process. Journal of Advanced Nursing 62 (1), 107-115.. The analysis process included open coding, creating categories, and abstraction Elo, S. & Kyngäs, H. 2008. The qualitative content analysis process. Journal of Advanced Nursing 62 (1), 107-115.

Ethical considerations

The first author ensured that the study participants were able to decide on the participation and had the capacity to give their consent. The study participants were informed about the study, both verbally and with a written information sheet. As this study focused on both the emotional and sensitive experiences of vulnerable individuals, special attention was given to protecting the well-being and autonomy of the study participants World Medical Association. Decleration of Helsinki. Ethical principles for medical research involving human subjects. Cited in November 12, 2016. http://jamanetwork.com/journals/jama/fullarticle/1760318 Pesonen, HM., Remes, AM. & Isola, A. Ethical aspects of researching subjective experiences in early-stage dementia. Nursing Ethics 18 (5), 651–661.

Results 

Three factors affecting the sense of security of home-dwelling people with an early stage memory disorder were identified: health and daily functioning, the features of physical and social environment, and the psycho-social resources of an individual (Figure 1). 

Factors affecting the sense of security of home-dwelling people with an early stage memory disorder

FIGURE 1. Factors affecting the sense of security of home-dwelling people with an early stage memory disorder

Health and daily functioning

Health and daily functioning includes an individual's independent daily functioning, safe medication, and needs-based technology supporting everyday life management. Study participants described that independent daily functioning was one of the most important things that supported their sense of security. Independent daily functioning consisted of daily routines, self-confidence, and living independently. Even if participants expressed feelings of insufficiency and dependence on another person, they also told that they would like to have control of their daily routines for as long as possible. Daily routines were related to their circadian rhythm, and they experienced a sense of security when things happened in the same way every day. A feeling of continuity was interconnected with self-confidence when people were able to make decisions independently.  

Safe medication supported the sense of security. Study participants reported that although the loss of memory impeded remembering, all were still able to take medications themselves or with the help of family members. They also experienced pill dispensers, calendar alerts, and electronic applications as being useful for reminding them to take medications. 

The study participants consistently pointed out that technology could support daily functioning and help them to manage everyday life. However, they had ambivalent feelings towards technology: on the other hand, they were satisfied about feeling independent and free, but at the same time they wanted to be secure even if it meant being monitored by technical security devices. Based on the participants’ experiences, they responded positively to the technical security devices and safety technology, but they also felt that they did not yet need any technological systems for everyday life and activities. They also reported that they did not know how to use the technical security devices or where to get them. 

The features of the physical and social environment

The sense of security was related to the features of the physical and social environment, which included features of the physical environment, informal and formal social support, being engaged in meaningful activities, family member's available resources, and economic situation. Familiar living environment, the absence of fears and threats, and the natural environment, were aspects that had supportive significance for the sense of security in people with a memory disorder. The living environment consisted of a peaceful and safe environment without fears and threats, such as a fear of falling. Some participants described that their own home where they have been living for a long time created their sense of security. The natural environment increased their happiness and well-being because the nature gave them strength and a feeling of safety. 

Both the informal and formal social support were important for study participants' social life, resources to manage everyday life, and comprehensive health and well-being. The informal social support from family members, friends, and neighbors supported the sense of security. Furthermore, study participants reported that professional support, such as practical information and advice, were important for coping with the diagnosis. Having the opportunity to talk about the feelings and concerns was relieving and helped people to deal with their problems. 

People with a memory disorder experienced that being engaged in meaningful activities was important for their social participation, independence, and well-being. Meaningful activities created a sense of well-being and self-esteem. They emphasized that by being in the same situation with peers, they were able to give emotional, social, and practical help to each other. This strengthened their sense of belonging and of being valued.

Family members stated that their available resources consisted of the ability to adapt to changing situations and the ability to manage everyday life. They also pointed out that it is important to take care of their own well-being and health and to focus on the positive things in life in the present. The family members' sense of security was related to their close ones' well-being and the received support from health care professionals. 

Furthermore, economic situation affected the sense of security for study participants because it enabled them to get necessary services and medications.

The psycho-social resources of an individual

Study participants experienced that the sense of security is related to the perception of the memory disorder and being prepared for the future. Their perception of the diagnosis was twofold: they were relieved and wanted to focus on positive things in life, but they also experienced negative feelings such as anger, fear, and hopelessness. 

People with a memory disorder were worried about the progress of the disease and its effects on family members. They were also concerned about their close one's condition and resources to take care of them. Their fears for the future were related to the fears of institutional care and loss of self-determination. The participants wanted to live at home as long as possible. They also wanted to be regarded as themselves, not according to their memory disorder. Living in the present and focusing on the positive things in life helped them in making plans for the future. After receiving a diagnosis of a memory disorder, some participants prepared for the future by discussing their wishes and future care with people close to them. 

Discussion

The results showed that independent daily functioning is a part of the people’s physical and social well-being From, I., Johansson, I. & Athlin, E. 2009. The meaning of good and bad care in the community care: Older people´s lived experienced. In the Journal of Older People Nursing 4 (3), 156–165., including daily routines, self-confidence, and living independently. According to previous studies, the sense of security has a relationship with the sense of control Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63. and continuity James, I., Ardeman-Merten, R. & Kihlgren, A. 2014. Ontological Security in Nursing Homes for Older Persons – Person Centred Care is the Power of Balance. The Open Nursing Journal 8, 79–87., which are also significant findings in this study. Being dependent on another person´s help may cause feelings of being a burden on others Mazaheri, M., Eriksson, L, E., Heikkilä, K. et al. 2013. Experiences of living with dementia: Qualitative content analysis of semi-structured interviews. Journal of Clinical Nursing 22 (21), 3032–3041. Steeman, E., Tournoy, J., Grypdonck, M. et al. 2013. Managing identity in early-stage dementia: Maintaining a sense of being valued. Ageing and Society 33 (2), 216–242., and this is the reason why people will actively try to maintain their independence and control over their own lives Gilmour, JA. & Huntington, AD. 2005. Finding the balance: living with memory loss. International Journal of Nursing Practice 11 (3), 118–124. Steeman, E., Tournoy, J., Grypdonck, M. et al. 2013. Managing identity in early-stage dementia: Maintaining a sense of being valued. Ageing and Society 33 (2), 216–242.

Needs-based technology supporting everyday life management was related to the sense of security. People had ambivalent feelings towards technology. Although they expressed positive interest towards assistive technology, they also felt that they do not yet need any technological systems. They also wanted to have a sense of self-efficacy as long as possible. At the same time, they were worried about their security and managing at home. According to Boström et al. Boström, M., Kjellström, S. & Björklund, A. 2013. Older persons have ambivalent feelings about the use of monitoring technologies. Technology and Disability 25, 117–125. and Hoof et al. Hoof, J., Kort, H., Rutten, P. et al. 2011. Ageing-in-place with the use of ambient intelligence technology: Perspectives of older users. International Journal of Medical Informatics 80, 310–331., older persons generally had positive feelings and attitudes toward technology. Earlier studies Brittain, K., Corner, L., Robinson, et al. 2010. Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments. Sociology of Health & Illness 32 (2), 272–287. Hoof, J., Kort, H., Rutten, P. et al. 2011. Ageing-in-place with the use of ambient intelligence technology: Perspectives of older users. International Journal of Medical Informatics 80, 310–331. Boström, M., Kjellström, S. & Björklund, A. 2013. Older persons have ambivalent feelings about the use of monitoring technologies. Technology and Disability 25, 117–125. have confirmed that technology helps to create a barrier-free home environment, which enhances a person's daily functioning and safe living at home. However, it is important to make the technology individualized and to introduce it to users at a sensitive time Boström, M., Kjellström, S. & Björklund, A. 2013. Older persons have ambivalent feelings about the use of monitoring technologies. Technology and Disability 25, 117–125.. As this study indicated, the challenges for technology are in how technology can help home-dwelling people with a memory disorder and what kind of solutions are available.

An association between the sense of security and relationships such as family and friends has been found in earlier studies Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63. Fonad, E., Wahlin, T., Heikkila, K. et al. 2008. Moving to and living in a retirement home: Focusing on elderly people’s sense of safety and security. Journal of Housing of the Elderly 20, 45–60.. Informal and formal social support, including social contacts and activities as well as resources to manage everyday life, were important for people with a memory disorder; this is in line with earlier studies Olsson, A., Engström, M., Skovdahl, K. et al. 2012. My, your and our needs for safety and security: relatives’ reflections on using information and communication technology in dementia care. Scandinavian Journal of Caring Sciences 26, 104–112. Fagerström, L., Gustafson, Y., Jakobsson, G., Johansson, S. & Vartiainen, P. 2011. Sense of Security among people aged 65 and 75: External and inner sources of security. Journal of Advanced Nursing 67 (6), 1305–1315. doi: 10.1111/j.1365-2648.2010.05562.x Lanne, M. 2013. Käsityksiä kotona asuvan ikäihmisen turvallisuuteen liittyvistä tarpeista ja palveluista. Gerontologia 27 (3), 262–276. Boström, M., Bravell, M., Lundgren, D., et al. 2013. Promoting sense of security in old-age care. Health 5, 56–63.. Furthermore, reciprocally helping each other was important for the study participants, as earlier studies have confirmed Steeman, E., Tournoy, J., Grypdonck, M. et al. 2013. Managing identity in early-stage dementia: Maintaining a sense of being valued. Ageing and Society 33 (2), 216–242. Steeman, E., Godderis, J., Grypdonck, M. 2007. Living with dementia from the perspective of older people: is it a positive story? Aging Mental Health 11 (2), 119–130.

Study participants had ambivalent feelings such as fear and uncertainty about the future along with relief and hope. According to Lawrence et al. Lawrence, V., Samsi, K., Banerjee, S. et al. 2011. Threat to valued elements of life: the experience of dementia across three ethnic groups. The gerontologist 51, 39–50., the threats that commonly accompany dementia depend on a person's understanding and attitude towards their own disease and their life values. As noted in earlier studies Pesonen, H., Remes, A. & Isola, A. 2013. Diagnosis of dementia as a turning point among Finnish families: A qualitative study. Nursing & Health Sciences 15 (4), 489–496. Steeman, E., Tournoy, J., Grypdonck, M. et al. 2013. Managing identity in early-stage dementia: Maintaining a sense of being valued. Ageing and Society 33 (2), 216–242. people with the diagnosis wanted to be recognized as individuals and they wanted to feel important and valuable. 

In this study, an analysis was verified by other authors to increase the comprehensiveness of the data Elo, S., Kääriäinen, M., Kanste, O. et al. 2014. Qualitative Content Analysis: A Focus on Trustworthiness. SAGE Open 1–10.. However, the study has some limitations. First, the sample was drawn from Northern Finland in one district area, which potentially limits the transferability of findings. Second, the study sample was small.

The results could be utilized to design tailored home health care services for home-dwelling people with a memory disorder. With adequate support, people with an early stage memory disorder could have accessible and safe living at home, which in turn could delay a move to long-term care. Further research is needed to generate a more comprehensive understanding of the sense of security for home-dwelling people with an early stage memory disorder and means to promote it.

References

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