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Keywords:

  • dementia;
  • experiences;
  • life-changing events;
  • relatives

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Aims and objectives

To examine the experiences of relatives of a spouse or parent who suffers from dementia and examines whether there are similarities or differences between these experiences.

Background

Dementia is an increasing illness in the world. Dementia affects not only the person with dementia but also the relatives. There is a lack of knowledge about the experience of being a relative to a dementia-suffering person.

Design and methods

Twenty-one stories from relatives were included in this study, and these stories were analysed by employing Kirsti Malterud's method ‘systematic text condensation’. The relatives were divided into four groups: sons, husbands, daughters and wives.

Results

Eight themes were identified in their stories, two in each of the four groups. From these eight themes, it was identified that they all experienced change, grief and negative personal sentiments. However, differences were also found, one of them being that the sons found it easier to adapt to new roles during the course of the illness, while the daughters found it more difficult. The husbands experienced being attacked by the people around them, while the wives were found to submit their dementia-suffering husbands to physical abuse. The wives also suffered from self-criticism.

Conclusions

The similarities between the four groups are more significant than the differences. Sons, husbands, daughters and wives of a person suffering from dementia should be considered on an equal basis in terms of their experiences of grief, change and personal negative sentiments.

Relevance to clinical practice

Relatives play a significant role in the well-being of their parent or spouse suffering from dementia. Therefore, professionals need to focus on both relatives and patient when they meet a person with dementia in clinical practice.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Approximately 80,000 people in Denmark are living with dementia, and around 400,000 people are living with a person who suffers from dementia (National Center for dementia 2011). Every year, about 15,000 new cases of dementia are diagnosed, and it is estimated that by 2050 close to 200,000 Danes will be suffering from dementia. In Europe, approximately 10 million people suffer from dementia (Alzheimer's Disease International 2009). It is expected that the number will have increased to around 14 million by 2030 and 19 million by 2050. Worldwide, about 35 million people suffer from dementia. The Alzheimer's Disease International recommends that nations develop national strategies for dealing with dementia and that they prioritise research related to dementia.

Dementia affects people suffering from it and their relatives and friends on a personal, emotional, economic and social level. Lack of knowledge about dementia is a global problem, and knowledge about dementia and the ways in which the illness affects relatives and healthcare systems is a help towards approaching this problem. In Denmark, a national strategy for dementia was developed in 2010 (Ministry of Social Affairs, Interior & Health Ministry 2010a). This strategy recommends focusing efforts on seven areas (Ministry of Social Affairs, Interior & Health Ministry 2010b). One of these seven areas is the importance of science related to social problems with regard to care, support and nursing. This will provide new validated knowledge and ensure that in the future care, support and nursing will be evidence based.

International science studies about relatives of people suffering from dementia show that relatives expose the sufferers to verbal abuse by cursing or insulting them (Cooper et al. 2009). In a few cases, physical abuse was registered, but results also show that one-third of the relatives who provide care for their dementia-suffering family members have been exposed to physical and psychological abuse from the sufferers (Cooper et al. 2010). The experience of being a burden is felt particularly strongly in the early days of the illness by husbands suffering from dementia (Samuelsson et al. 2001), but relatives can also experience moderate burden as well as feelings of great satisfaction at the same time (Andrén & Elmståhl 2005). The experience of burden does not differ significantly when comparing spouses to other relatives who do not live with the dementia-suffering relative (Helmes et al. 2005). The experiences of relatives of dementia sufferers include feelings of being isolated and stressed, having a lack of strength and being in bad physical condition (Clyburn et al. 2000, Bullock 2004). Persons who are living with their dementia-suffering relatives show a higher level of anxiety and depression than persons who are not living with their dementia-suffering relatives (Connell et al. 2001, Schulz et al. 2004). Husbands have a higher frequency of complaints about anxiety, and wives have a higher frequency of complaints about symptoms of depression (Croog et al. 2001). If relatives – no matter what relation they have to the dementia sufferers – have a good network, their experience of burden will be reduced (Atienza et al. 2001).

Danish scientific research of relatives of a person suffering from dementia shows that the relatives have a clear need to be able to continue living with their dementia-suffering spouses, without this affecting the health of the nondementia-suffering relatives (Board of Service 2007a,b,c, 2008). The relatives need help in order for them to be able to identify their own needs and ask for help. The relatives need an external authority to help them by being the initiator when tough questions arise, and by providing information about the available offers for relatives of dementia-suffering spouses. The studies also found that central problems create the experience of burden among the relatives of a dementia-suffering spouse. These problems concerned the needs of the dementia sufferer, interpersonal relationships, the division of roles between the relative and the dementia-suffering spouse, and finally supervision and control of the dementia sufferer.

The experiences of burden felt by the relatives of a dementia-suffering person are explored by Haaning (2001). It was found that relatives of dementia sufferers who were living at home could experience both satisfaction and burden. Spouses of dementia sufferers experienced a higher level of burden in caring for them than other relatives. The spouses had a reduced opportunity to relax because of the increased work demands, resulting in a situation that could cause health problems for the nondementia-suffering spouse and ultimately end their caring for their spouse suffering from dementia.

We find that there is a lack of knowledge about the experiences of relatives of a spouse or parent suffering from dementia. It is important that scientific knowledge is produced in this area of nursing and in other areas that deal with dementia sufferers and their relatives. Therefore, this study aims to explore the experiences of being a relative of a spouse or parent suffering from dementia and examine similarities and differences between four separate groups of relatives: sons, husbands, daughters and wives.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

A phenomenological and hermeneutic approach, inspired by Kirsti Malterud's method, systematic text condensation (STC) (Malterud 2008), was used in this literature study to extract the meaningful content of 21 stories from relatives. The 21 stories were published for use in scientific studies (Older Fund 2002). The findings from this study will be discussed in relation to evidence-based studies and theory about loss and grief.

Participants

In this study, 21 stories from relatives of dementia sufferers were included. The stories were told by three husbands, three sons, eight daughters and seven wives. The relatives were divided into the following four groups to make a comparison of their experiences: sons, husbands, daughters and wives. The data were based on stories from adult sons aged between 38 and 59 years and their dementia-suffering parents aged between 69 and 87. The stories reported by the husbands, who were aged between 67 and 76 years, were based on their experiences with their dementia-suffering wives, aged between 65 and 76 years. The stories from the daughters, who were between the age of 45 and 63 years, were based on experiences with their dementia-suffering parents between 60 and 87 years and their late parents who died between the age of 72 and 86 years. Finally, the stories from the wives who were between the age of 58 and 84 years were based on their experiences with their dementia-suffering husbands between the age of 62 and 88 years The stories were included in a book published by the Older Fund (2002) in Denmark. The book consists of 25 stories from relatives of a dementia-suffering family member. Twenty-one of these stories were told by adult children and spouses and therefore relevant for this study.

The personal circumstances of the different relatives included in the book vary. The relatives are looking back on many years of being a relative to a late or still living dementia-suffering parent or spouse. Through these years, the adult children have not been living with the parent. However, some adult children have moved in at their parent for a period of time, and one adult daughter lived in a flat underneath her dementia-suffering mother. In the majority of the stories, both adult children and spouses experience that their dementia-suffering parent or spouse has to move into a care home.

Ethical aspects

The stories included in this study were already published in a book without anonymity (Older Fund 2002). Although the relatives in the published book are not anonymous, we have contacted them anonymously in this study to make sure that the ethical rules for research are followed. In the book, the authors encourage professionals to use the published stories in research. Even though this statement is expressed clearly in the book, we have contacted the authors and asked for permission to use the stories in our study. This resulted in a written consent from the authors of the book, and furthermore, the authors welcomed very much that their stories would be used in research.

Systematic text condensation

Malterud's method (2008) consists of four steps: 1) making overall sense of the text, 2) finding meaningful units from the text and work with themes and codes, 3) condensing codes to meaningful units, and 4) making a summarised text that is faithful to the original data and includes one relevant citation from the relatives' stories. Malterud's method recommends the researcher to identify about 2 to 4 themes from each data group. In this study, the stories were therefore read several times without systematising the text (step 1). Themes and codes then started to emerge from the text (step 2). Condensing was made by looking closely at the themes from step 2 and adjustments made if necessary (step 3). The findings from the analysis process were summarised, and quotes were selected to each identified theme (step 4). Two themes were identified to each of the relative groups in this study.

Findings: eight themes

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Eight themes were identified from analysing the 21, two from each of the relative groups. The eight themes are presented in Table 1. The findings from the four groups are presented in four sections, starting with a presentation of the sons' stories.

Table 1. Eight themes identified from the four groups of relatives
RelativeTheme
SonsEmbraced by death
The challenge of experiencing a slow decay
HusbandsExperiencing attack from the surroundings
The pain caused by losing your wife bit by bit
DaughtersLosing your parent before death occurs
Becoming a parent for your parent
WivesExperiencing your husband change into another person
Experiencing yourself as an evil person

Sons: embraced by death and experiencing a slow decay

Two themes emerged from the stories of the three sons. The first theme ‘Embraced by death’ explores the sons’ ambivalent feelings about the death of their dementia-suffering parents. The sons resist death, and they experience the unjust that dominates their parent's life by creating a state of living death. One son describes his experiences from this first theme with the following words:

‘It took about a dozen years before life let him go. The last four to five years his beautiful blue eyes looked at nothing, while the body lived on. As with most other relatives the thoughts appeared about a living dead’. (Older Fund 2002)

The second theme ‘The challenge of experiencing a slow decay’ explores the challenge of experiencing the change in the sons' dementia-suffering parent. The sons all wanted to help their parent and spent much time acting out how to help. They adapted to changes in former roles in their relationship with their parent and other family members. If the sons were not able to cope with the problems, it created emotional disturbance. One son expressed this with the following words:

‘I would so much like to help. I get a bad conscience from not helping. I find it hard calling my parents because my mother's voice makes my grief even stronger. I mourn and I feel ashamed at the same time because I find it difficult to relate honestly and realistically to her illness. Most of all I feel ashamed of feeling that life has struck me hard because my mother is the one who's ill’. (Older Fund 2002)

Husbands: being attacked and experiencing loss

Two themes were identified from the stories of the three husbands. The first theme ‘Experiencing attack from the surroundings’ explores how the husbands feel that they are under attack from their children for talking too hard to their dementia-suffering wife or that they are being attacked from surroundings because they cannot understand that their wife is suffering from dementia. These attacks affect the husbands emotionally because they do not see themselves as someone who is handling the situation wrongly. One husband uses the following words from this experience:

I visited her every day at the nursing home and we went for walks. We talked with people from the area in which we've lived for many years. Anna understood and participated in the conversation until her mask at some point fell. If I met some of the people the next day, they could not understand that I wasn't able to have Anna at home because from their point of view she wasn't ill. (Older Fund 2002)

The second theme ‘The pain caused by losing your wife bit by bit’ explores how the husbands feel pain during the illness of their dementia-suffering wives. This is a challenge for the husbands. One considers leaving his wife because she is angry with him most of the time. However, all husbands stay with their wives. They describe it as a burden or something that is hard to carry and that no one can carry it for them. One husband describes this experience:

At that time I almost broke down […]. Emma's illness went down a steep hill and it was difficult for me to handle all things. It was so hard to accept that Emma, who I care so much about, is no longer the same person she used to be and never will be again. (Older Fund 2002)

Daughters: dying before death appears and being a parent for your parent

Two themes were identified from the stories of eight daughters. The first theme ‘Losing your parent before death occurs’ explores the difficulties about losing your parent psychologically and physically. The daughters experience that they lose their dementia-suffering parent before death due to changes in the parent's personality. The daughters grieve over this change, and one daughter uses the following words to describe her experiences:

That afternoon my mother's eyes looked at me uninterested. There was no glance of happiness or connection. My mother didn't recognise me. When I tried to give her a hug she looked frightened at me. At that point I couldn't keep my tears back; they just stood out of my eyes […]. My mother died to me that day she didn't recognise me anymore. That day I felt that nothing mattered anymore. (Older Fund 2002)

The second theme ‘Becoming a parent for your parent’ explores the daughters’ experiences with changes in roles during the illness of their dementia-suffering parent. The daughters experience that their parent changes into a person who needs help to handle their everyday life. They use words reminiscent to the words used in caring for children. Some of the daughters cut off contact with their parent for a period of time because the situation was too hard to handle. But even though they find it hard adapting to the new situation, they all make an effort. One daughter expresses her situation in the following way:

I spent one week of my vacation in a last effort to succeed in making my mother go to day centre. It was incredibly hard on me – and her. To pick her up at home, drive her to a place she didn't like, telling her it was for her and dad's own good, watching her stand crying at the day centre, being hard and leaving her anyway hoping everything would turn out okay. No, it was too hard and I had to quit trying. (Older Fund 2002)

Wives: losing your husband and becoming an evil wife

Two themes were identified from the stories of the seven wives. The first theme ‘Experiencing your husband change into another person’ explores that the wives mourn about their husband changing into another person because of dementia. They feel that they are losing their husband and are trying to find their way through the unknown and to follow their husbands as long as possible before they disappear into the twilight. The wives experience bitterness, fear, anxiety and loneliness through these changes. One wife explains her situation with the following words:

I knew that we were on our way to something unknown. What this unknown meant at that point, I didn't know. I cried because I knew the man who through many years had been my Peter, and whom I loved, I would lose bit by bit […]. I felt like standing in front of a steep mountain and if I made my way up it was just to find another steep mountain to climb. (Older Fund 2002)

The second theme ‘Experiencing yourself as an evil person’ explores the experiences of becoming an evil person towards your dementia-suffering husband. The wives experience that they wish their husband was dead, and they would shake them and yell at them. In other words, they find that they are not always nice to their husbands. The wives reflect on their actions and are aware that something must be done to change their behaviour, which gives rise to a bad conscience and causes self-criticism. Experiences of becoming an evil person make the wives create changes to make a better living for their husbands and themselves. One wife uses the following words to describe her experiences:

That night my rucksack overflowed. How come? Well, for ten years I've probably said to myself 1000 or 4000 times that Robert was not to blame for his behaviour. All the times I had apologised for Robert were hidden in my rucksack. But suddenly the rucksack was full. I couldn't do it anymore. I snapped at Robert and was not nice to him anymore. If we continued living together I would break down, which wouldn't benefit Robert or me. Therefore Robert moved to a nursing home. (Older Fund 2002)

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Three general experiences

It was found from the STC analysis of the 21 stories in this literature study that all four groups of relatives experienced change, negative personal sentiments and grief during the illness of their dementia-suffering spouse or parent. All the relatives experienced that their spouse or parent changed personality and due to the illness they never again reached a constant level in their person;?>ality – changes always appeared and often in a negative direction.

Also negative personal sentiments are experienced in all four relative groups. These negative sentiments are described as guilt, anger, shame, sadness, psychological pain, fear, loneliness, being let down by your dementia-suffering spouse or parent, and bitterness. The negative sentiments are defined in this literature study from the relatives' own reflection of their sentiments. They would like to be without them and wish they could handle the dementia illness without these sentiments. Therefore, they are called negative personal sentiments in this study. The final general experience from the four relative groups is their grieving over the loss of their spouse or parent. The relatives experience constant loss due to the changes dementia causes. The relatives are grieving and moving in and out of this feeling during their many years of being a relative of a dementia-suffering spouse or parent. The level of grief is changing individually in relation to the loss they experience in their relationship with their spouse or parent.

The experience of grief is described in two theories about crisis: Johan Cullberg's (2008) theory of reaching crisis, and ‘the dual process model’ by Stroebe et al. (2002). Cullberg's theory is a linear understanding of the human reaction on crisis developing through four phases: shock, reaction, adaptation and new orientation. Stroebe et al. understand the process of sorrow as a dual process. Therefore, a person in grief experiences changing through a loss-oriented state to a restoration-oriented state. Both of these states are natural reactions in a process of grief, and individual differences are seen in the time spent in the loss- or restoration-oriented state. In relation to this study, the theory of Stroebe et al. is found to be able to describe very precisely the experiences of grief that were identified among the included relatives. The relatives of a dementia-suffering spouse or parent are not recovering from the grief as long as their spouse or parent is alive. From time to time, they are changing from feeling grief to being oriented to the future or experiencing a good period of time with their spouse or parent. The change through these two states is a process that continues through many years, and therefore, it is not compatible with Cullberg's linear theory of crisis and especially not experiences of acute shock during their many years as a relative of a dementia-suffering spouse or parent.

The findings in relation to other studies

Physical and verbal abuse among relatives and their dementia-suffering spouse or parent was identified in this study among wives to husbands suffering from dementia. The wives experienced that they could yell at their husband and in some rare situations where they were exhausted they could shake them. These findings are similar to those by Cooper et al. (2009). They found that relatives sometimes exposed their dementia-suffering spouse or parent to verbal abuse and in some rare cases to physical abuse. But according to Cooper et al. (2010), the relatives are also exposed to psychological abuse from their dementia-suffering spouse or parent and in some cases also exposed to physical abuse. These last two findings were not identified in this study.

The experience of burden was identified among all relatives in this study. The feeling of burden was identified in direct statements from the husbands and wives to a dementia-suffering spouse. They experienced that the burden was very hard to carry and sometimes too hard. But they were the only ones to carry it and they felt exhausted. The sons and daughters in this study also experienced burden, even though they did not use the exact word. Instead, they used words like disappointment, emotional involvement, anger, worry and sorrow. According to other findings, these experiences are similar to experiencing burden (Samuelsson et al. 2001, Andrén & Elmståhl 2005, 2008). Furthermore, McConaghy and Caltabiano (2005) found that relatives of a dementia-suffering person are at risk of developing a psychological and physical illness due to their experience of burden. In this study, an emotional involvement in the illness of their dementia-suffering spouse or parent is therefore identified (Ibid). Furthermore, Martin et al. (2006) found that relatives of a dementia-suffering spouse or parent are at risk of developing a depression because of their emotional involvement during the illness of their relatives.

Reflections on the findings and method

Using stories from a published book has its limits which weakens the validity of this study, for instance not being informed of how the stories were collected, and what kind of questions the included relatives were asked. The book is part of a series about grief and loss. Therefore, it is not known whether the relatives were included in order to tell about grief and loss during the illness of their dementia-suffering spouse or parent, or whether they were included because grief and loss are a big part of being a relative. The last thesis was found to be the case in this study, and therefore, the stories were found to be relevant to explore. It is not possible to generalise from the findings as regards other relatives of dementia-suffering persons, but they can be used to contribute to the experience of being a relative of a dementia-suffering parent or spouse. The fact that there is an unequal number of relatives in each relative group is also a weakness to the validation of the findings and the ability to compare these findings. However, it is found that each relative group contributes with useful knowledge about its experience and therefore is relevant to include in this study. The findings are presented as the relatives' experiences of their situation, and therefore, it could be discussed – for instance – whether the wives are evil persons or whether their reactions in some cases are in fact understandable although not acceptable. The findings are based on stories published in 2002, but they are found to be relevant to use in this study despite changes in society and the offers available to relatives of dementia-suffering persons today. Because of the identification of difficulties among relatives of a dementia-suffering person from newer data, the stories from 2002 are found relevant to use in this study.

Malterud's method STC is meant as a guideline for qualitative research. The method is found to be relevant and effective for use in this study.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

This study explored the experiences of being a son, husband, daughter or wife to a dementia-suffering person and aimed to identify similarities and differences between these four groups of relatives. Significant similarities about change, grief and personal negative sentiments were identified. The similarities among the four groups were more significant than the identified differences. Because of the majority of similarities in the four relative groups, it is concluded that sons, husbands, daughters and wives to a dementia-suffering spouse or parent are to be seen on an equal basis.

Relevance to clinical practice

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Further scientific knowledge is needed to explore the experiences of being a relative of a dementia-suffering parent or spouse in order to base practice on their experiences. Multi-professional research should be carried out to provide new knowledge to the groups of professionals who include the relatives of dementia-suffering persons in their work. Practising nurses can use the findings from this study when they have either a dementia-suffering person or a relative to a dementia-suffering person admitted in primary and secondary sector. In both situations, it is highly relevant that dementia-suffering persons depend on their relatives. But this dependence may also be very hard on the relatives. Therefore, we need to be more aware of helping the relatives to persons suffering from dementia in order to take care of the resources of the relatives. For instance, this could mean talking with the relatives about their everyday life and identifying problems, and trying to solve these problems, for instance by giving the relatives some time off during the admission of the dementia-suffering person, or arranging help from others, for instance home care if this is needed. Focusing on the person suffering from dementia is important. However, the relatives are also very important, which is why both should always be included when nurses meet them in clinical practice.

Contributions

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References

Study design: RM, RB; data collection and analysis: RM, RB and manuscript preparation: RM, RB.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Findings: eight themes
  6. Discussion
  7. Conclusion
  8. Relevance to clinical practice
  9. Contributions
  10. References
  • Alzheimer's Disease International (ADI) (2009) World Alzheimer Report 2010. ADI, London.
  • Andrén S, Elmståhl S (2005) Family carers' subjective experiences of satisfaction in dementia care: aspects of burden, subjective health and sense of coherence. Scandinavian Journal of Caring Science 19, 157168.
  • Andrén S & Elmståhl S (2008) The relation between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia. Journal of Clinical Nursing 17, 790799.
  • Atienza AA, Collins R & King AC (2001) The mediating effect of situational control on social support and mood following a stressor: a prospective study of dementia caregivers in their natural environments. Journal of Gerontology and Social Science 56B, 129139.
  • Board of Service (Servicestyrelsen) (2007a) Cohabiting with Dementia. A Questionnaire about Daily Life with a Demented. Board of Service (Servicestyrelsen), Odense.
  • Board of Service (Servicestyrelsen) (2007b) Relatives to a Demented. A Questionnaire about their Health and Needs. Board of Service (Servicestyrelsen), Odense.
  • Board of Service (Servicestyrelsen) (2007c) Cohabiting with Dementia. An Analysis of Eight Interviews about Daily Life with a Demented. Board of Service (Servicestyrelsen), Odense.
  • Board of Service (Servicestyrelsen) (2008) De pårørendes behov – når demensen flytter ind (Family Members' Needs – When Dementia is Moving in). Board of Service (Servicestyrelsen), Odense [in Danish].
  • Bullock R (2004) The needs of the caregiver in the long-term treatment of Alzheimer Disease. Alzheimer Disease & Associated Disorders 18, 1723.
  • Clyburn LD, Stones MJ, Hadjistavropoulos T & Tuokko H (2000) Predicting caregiver burden and depression in Alzheimer's Disease. Journal of Gerontology and social science 55B, 213.
  • Connell CN, Janevic MR & Gallant MR (2001) The costs of caring: impact of dementia and family caregivers. Journal of Geriatric Psychiatry and Neurology 14, 41794187.
  • Cooper C, Selwood A, Blanchard M, Walker Z, Blizard R & Livingston G (2009) Abuse of people with dementia by family carers: representative cross sectional survey. British Medical Journal 338, b155.
  • Cooper C, Selwood A & Blanchard M (2010) Abusive behaviour experienced by family carers from people with dementia: the CARD (caring for relatives with dementia) study. Journal of Neurology, Neurosurgery & Psychiatry 81, 592596.
  • Croog SH, Sudilovsky A, Burleson JA & Baume RM (2001) Vulnerability of husband and wife caregivers of Alzheimer disease patients to caregiving stressors. Alzheimer Disease & Association 15, 201210.
  • Cullberg J (2008) Crisis and Development, 5th edn. Hans Rietzel Publishing House, Copenhagen.
  • Haaning M (2001) Family Care for Older Home Living People with Dementia. A Qualitative Intervention Study. PhD Thesis, Faculty of Humanities, University of Copenhagen, Copenhagen.
  • Helmes E, Green B & Almeida OP (2005) Individual differences in the experience of burden in caring for relatives with dementia: role of personality and mastery. Australasian Journal of Agening 24, 202206.
  • Malterud K (2008) Kvalitative metoder i medisinsk forskning (Qualitative Methods in Medical Research), 2nd edn. The University Publisher, Oslo.
  • Martin Y, Gilbert P, McEwans K & Irons C (2006) The relation of entrapment, shame and guilt to depression in carers of people with dementia. Aging & Mental Health 10, 1016.
  • McConaghy R & Caltabiano ML (2005) Caring for a person with dementia: exploring relationship between perceived burden, depression, coping and well-being. Nursing and Health Sciences 7, 8191.
  • Ministry of Social Affairs, Interior and Health Ministry (2010a) National Action Plan for Dementia Effort. Silkebog Letterpress, Silkebog.
  • Ministry of Social Affairs, Interior and Health Ministry (2010b) Mapping of Dementia in Denmark 2010. Silkeborg Letterpress, Silkebog.
  • National Center for Dementia (2011) Available at: http://www.videnscenterfordemens.dk/viden-om-demens/noegletal (accessed 20 November 2011).
  • Older Fund (Ældre Fonden) (2002) Pårrende om Demens. 25 Danskere Skriver om at være Pårrende til en Dement (Caregivers about Dementia. 25 Danes Write about the Experience of Being a Relative to a Demented Person), 1st edn. Kroghs Publishing House, Vejle [in Danish].
  • Samuelsson AM, Annerstedt L, Elmstråhl S, Samuelsson SM & Grafström M (2001) Burden of responsibility experienced by family caregiver of elderly dementia sufferers. Analyses of strain, feelings and cooping strategies. Scandinavian Journal of Caring Science 15, 2533.
  • Schulz R, Belle SH, Czaja SJ, McGinnis KA, Stevens A & Zhang S (2004) Long-term care placement of dementia patients and caregiver health and well-being. Journal of the American Medical Association 292, 9617.
  • Stroebe S, Stroebe W, Hansson RO & Schut H (2002) Handbook of Bereavement Research. Consequences, Coping and Care, 3rd edn. American Psychological Association, Washington, DC.

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