A qualitative study of family members’ experiences of their loved one developing dementia and their subsequent placement in a nursing home
Open accessAbstract
AIM: To investigate the family members' experiences with receiving help and support while their loved one develops dementia and their subsequent placement in nursing homes. BACKGROUND: As the dementia disease progresses, some family members will struggle with the option of nursing home placement. This situation can precipitate feelings of anger, disappointment and guilt, all of which can be overwhelming. METHODS: A qualitative descriptive study with in-depth interviews (n = 19) was carried out in several nursing homes of Slovenia's North Eastern Region. RESULTS: Inductive thematic analysis identified two main themes: (i) developing the diagnosis and (ii) accommodation process. Family members noticed the progressive behavioural changes in their loved ones. While they were searching for help at the primary health care level, they experienced a lack of help and support. CONCLUSIONS: When family members detect behavioural changes in their loved ones, the primary health care team should establish an early diagnosis of dementia and provide adequate decision-making support. IMPLICATIONS FOR NURSING MANAGEMENT: The findings are useful to prepare guidance for a family member to inform them of the types of support available and from which associations and organisations. To achieve adequate management support, primary health care teams need to be aware of family member experiences.
AI snapshot
Written from the paper’s full text.
TL;DR
This qualitative study explored Slovenian family members’ experiences as their loved one developed dementia and was subsequently placed in a nursing home. It identified two main themes—developing the diagnosis and the accommodation process—and reported that family members felt unsupported by primary healthcare and struggled emotionally with placement decisions.
Key findings
- Nineteen family members (12 female, 7 male; 3 spouses, 11 children, 5 grandchildren) described cognitive and behavioural changes; all 19 observed changes not typical of normal behaviour, with no longer recognising them and repeating words/questions most shocking; 14 reported night problems, and 5 reported clothing/nakedness issues.
- All 19 initially did not realise symptoms or see them as genuine; when seeking help, all expressed dissatisfaction with primary healthcare team support, and the study reports insufficient assistance in Slovenia from voluntary organisations and dementia care services; only one family member received support from a voluntary organisation (telephone advice).
- In the accommodation process, 17 expressed guilt, sadness, anger, shame, and fear; all 19 had to decide on nursing home accommodation, and 7 made the decision while their loved one was in hospital. After placement, some felt relief and able to go on with their lives, while some continued guilt and sadness during visits; most said their loved one appeared happy when visited.
- Regarding nursing home care, family members were satisfied with kind, friendly, professional staff, but 12 expected care could improve and 7 noted staff were overburdened or that there were not enough staff.
Methods
- Qualitative descriptive design using in-depth interviews, COREQ reporting, and purposive sampling in several nursing homes in Slovenia’s North Eastern region; 274 family members were identified and invited, 24 consented, and data collection ended after 19 interviews reached saturation; five consented family members were not included.
- Interviews were conducted March–May 2018 by the first author, lasted 40–70 minutes, were held in a private visitor’s room, audio-recorded, verbatim transcribed, anonymised, and imported into ATLAS.ti8; inductive thematic analysis followed Braun and Clarke, with line-by-line coding by three researchers and then all four, and discrepancies discussed to consensus.
- Eligibility included adult family members (18+) who were a spouse, next of kin, or child of residents with a dementia diagnosis, residents who had lived in the nursing home at least one month, and family members who visited at least once a week; exclusions were children under 18 not next of kin, residents without a dementia diagnosis, newly placed residents (less than one month), and family members visiting less than once a week.
Limitations
- The paper states results are not generalisable but may be relevant to other family members coping with nursing home placement and to primary healthcare team members; it presents a snapshot of Slovenia and could be transferable to countries with similar health systems.
- The paper states the sample was heterogeneous concerning gender, age, and family relationship, which may affect transferability of findings.
- Evident from the text: interviews were analysed without returning to participants for comment and/or corrections, five consented family members were not included after data saturation, and the findings rely on self-report from a single-country sample.
Model-written summary. Check it against the paper before relying on it.
Integrity signals
Registry
Cites
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Claims the paper makes
0 of 24 cited sources checked · 0 supported · 0 flagged
- Findingown data
Family members had to face that their loved ones could not perform daily living activities without help and support.
“Family members had to face that their loved ones could not perform daily living activities without help and support.”
Quote in the paperSubstantial claim - Findingown data
The inductive thematic analysis identified two main themes: developing the diagnosis and accommodation process.
“The inductive thematic analysis led to the identification of two main themes: (i) Developing the diagnosis and (ii) Accommodation process (Table 3).”
Quote in the paperSubstantial claim - Findingown data
All family members described how symptoms intensified and led them to consider moving their loved one to a nursing home.
“All FMs described how the symptoms intensified and led them to consider the option to move their loved one to the nursing home.”
Quote in the paperSubstantial claim - Findingown data
Five family members had problems with clothes because the person was not aware that they went out naked in the street looking for their clothes.
“Others (n = 5) had problems with clothes because the person was not aware that they went out naked in the street looking for their clothes.”
Quote in the paperNot a substantial claim - Findingown data
As soon as family members realised they needed help, they tried to search for solutions.
“As soon as they realised that they would need help, they tried to search for solutions.”
Quote in the paperNot a substantial claim
- Findingown data
Only one family member got support from a voluntary organisation in the form of telephone advice on how to communicate with people living with dementia.
“Only one FM got support from the voluntary organisation in the form of telephone-advice how to communicate with people living with dementia.”
Quote in the paperNot a substantial claim - Findingown data
All 19 family members observed changes in the older person that were not typical for normal behaviour.
“All interviewees (n = 19) observed changes in the older person, i.e. the changes were not typical for normal behaviour.”
- Also stated in: § Accepted Article · plain
“In all interviews, the FMs noticed behaviour changes in their loved one that was not usual before they developed dementia.”
Quote in the paperNot a substantial claim - Also stated in: § Accepted Article · plain
- Findingown data
Family members did not receive enough verbal information from the primary healthcare team about what to expect and how to prepare.
“the FMs did not receive enough verbal information from the primary healthcare team about what to expect and how to prepare.”
- Also stated in: § Accepted Article · plain
“For example, the family doctor gave them”
Quote in the paperSubstantial claim - Also stated in: § Accepted Article · plain
- Findingown data
When family members were faced with transferring an older person living with dementia to a nursing home, they found this very difficult.
“When the FM was faced with transferring an older person living with dementia to a nursing home, they found this very difficult.”
Quote in the paperSubstantial claim - Findingown data
After the decision is made, family members mostly expressed guilt, fear, anger, and shame while preparing their loved ones for nursing home placement.
“After the decision is made, FMs mostly expressed guilt, fear, anger, and shame while preparing their loved ones for nursing home placement.”
Quote in the paperNot a substantial claim - Findingown data
The biggest problem highlighted by family members is the lack of support and continuity from the diagnosis, the disease progression, and especially when deciding for home placement.
“The biggest problem highlighted by the FMs is the lack of support and continuity from the diagnosis, the disease progression, and especially when deciding for home placement.”
Quote in the paperSubstantial claim - Findingown data
The disease progressed to the point that all 19 family members had to decide on nursing home accommodation.
“The disease progressed to the point that the FMs (n = 19) must decide on nursing home accommodation.”
Quote in the paperNot a substantial claim - Findingown data
Guilt and helplessness were mostly felt by those family members who did not want to place their older person living with dementia, but the situation forced them into it.
“We found that guilt and helplessness were mostly felt by those FMs who did not want to place their older person living with dementia, but the situation forced them into it.”
Quote in the paperSubstantial claim - Findingown data
Family members did not seek help from voluntary organisations because they did not know such organisations existed.
“Help was not sought from voluntary organisations, because they did not know they existed.”
Quote in the paperNot a substantial claim - Findingown data
Seven interviewees already had to take the decision while their loved one was in the hospital, as the condition was such that it was not possible to care for them at home.
“Some (n = 7) interviewees already had to take this decision while their loved one was in the hospital, as the condition was such that it was not possible to care for them at home.”
Quote in the paperNot a substantial claim - Findingreasoning
Family members are satisfied with the kind and friendly caring staff attitude.
“Hence, FMs are satisfied with the kind and friendly caring staff attitude.”
Quote in the paperNot a substantial claim - Findingown data
Family members' satisfaction and gratitude for caring, warmheartedness, kindness, professionalism, and trustworthiness of the nursing staff were highlighted in this study.
“Their satisfaction and gratitude for caring, warmheartedness, kindness, professionalism, and trustworthiness of the nursing staff were also highlighted in this study.”
Quote in the paperNot a substantial claim - Findingown data
Guilt, sadness, anger, shame and fear were mostly expressed by many family members (n=17).
“Guilt, sadness, anger, shame and fear were mostly expressed by many FMs (n = 17).”
Quote in the paperNot a substantial claim - Findingown data
Some family members continue to struggle with emotions like guilt and sadness, notably during visits to the nursing home.
“Some FMs continue to struggle with emotions like guilt and sadness, notably during visits to the nursing home.”
Quote in the paperNot a substantial claim - Findingown data
Family members were allayed when they realised that their loved one received all the necessary care.
“Furthermore, the FM realised that the decision was taken, but they were allayed when they realised that their loved one received all the necessary care.”
Quote in the paperNot a substantial claim - Findingown data
Family members reported that their concerns were allayed when they were satisfied with the nursing care provided to their loved ones.
“The FMs reported that their concerns were allayed when they were satisfied with the nursing care provided to their loved ones.”
Quote in the paperSubstantial claim - Findingown data
Most family members expressed that their loved one appeared to be happy when they visited the nursing home.
“Most FMs expressed that their loved one appeared to be happy when they visited the nursing home.”
Quote in the paperNot a substantial claim - Findingown data
With advancing dementia symptoms, the increasing burden on family members led to a point where they could not cope anymore.
“With the advancing symptoms of dementia, the increasing burden on FMs led to a point where they could not cope anymore.”
Quote in the paperSubstantial claim - Findingown data
Family members search for help from the primary healthcare team as the first point of contact.
“Findings from this study also show that FMs need help when their loved ones develop dementia, and they search for help from the primary healthcare team as the first point of contact.”
Quote in the paperSubstantial claim - Findingown data
Nursing staff establish a special bond with the family.
“Nursing staff establish a special bond with the family.”
Quote in the paperNot a substantial claim - Findingown data
The results show how difficult it is for family members to face the decision of nursing home accommodation.
“The results show how difficult it is for them to face such a decision.”
Quote in the paperSubstantial claim - Findingown data
Family members need help when their loved ones develop dementia.
“Findings from this study also show that FMs need help when their loved ones develop dementia, and they search for help from the primary healthcare team as the first point of contact.”
Quote in the paperSubstantial claim - Findingown data
All family members had spent difficult moments during the transfer of their relative to a nursing home.
“We noticed that all FMs had spent difficult moments during the transfer of their relative to a nursing home.”
Quote in the paperNot a substantial claim - Findingown data
Some interviewees felt that they had done everything they could to help their loved one.
“With all the decisions and strong emotions, some interviewees felt that they had done everything they could to help them.”
Quote in the paperNot a substantial claim - Findingown data
Family members are grateful that staff care so well for their loved ones.
“They are grateful that staff care so well for their loved ones.”
Quote in the paperNot a substantial claim - Findingown data
Help was not sought from voluntary organisations because family members did not know they existed.
“Help was not sought from voluntary organisations, because they did not know they existed.”
Quote in the paperNot a substantial claim - Findingown data
Our findings show that the primary healthcare system is not effective in establishing an early diagnosis.
“Our findings show that the primary healthcare system is not effective in establishing an early diagnosis.”
- Also stated in: § Conclusions · plain
“In this study, insufficient diagnosis and lack of support at the primary healthcare level were found.”
Quote in the paperSubstantial claim - Also stated in: § Conclusions · plain
- Premisecitation
There is a gap in research on family members' experiences of providing help and support from diagnosis through dementia progression and subsequent nursing home placement.
“However, there is a gap in the experience of FMs in providing help and support since diagnosis, progression dementia, and providing support in their subsequent placement a loved one in a nursing home.”
- Also stated in: § Accepted Article · plain
“the experiences of FMs with such help and support are not researched enough.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Lord et al. (2016)
Not checked in the free run.
- Also stated in: § Accepted Article · plain
- Interpretationown data
All family members were visibly disappointed by a country that did not offer them adequate assistance.
“The interviews showed us that all FMs were visibly disappointed by a country that did not offer them adequate assistance.”
Quote in the paperNot a substantial claim - Study design and conductnone given
The sample was quite heterogeneous concerning gender, age, and family relationship.
“The sample was quite heterogeneous concerning gender, age, and family relationship.”
Quote in the paperNot a substantial claim - Interpretationcitation
When behavioural and psychological symptoms of dementia increase, this leads family members to the crisis moment to decide on nursing home placement.
“Behavioural and psychological symptoms of dementia are common (Resnick et al., 2018), and when they increase, this leads FMs to the crisis moment to decide on nursing home placement.”
Quote in the paperSubstantial claim - Premisecitation
Adequate support from nursing home staff helps reduce family members' feelings such as guilt, sadness, fear, anger, and helplessness.
“Adequate support from nursing home staff helps reduce FMs feelings such as guilt, sadness, fear, anger, and helplessness (Graneheim et al., 2014;Lord et al., 2016).”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Graneheim et al., 2014
Not checked in the free run.
- cites Lord et al., 2016
Not checked in the free run.
- Premisecitation
According to Cole et al. (2018), the shortage of adequate support to family members is a significant indicator for deciding to move their loved ones into a nursing home.
“According to Cole et al. (2018), the shortage of adequate support to FMs is a significant indicator for deciding to move their loved ones into a nursing home.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Cole et al. (2018)
Not checked in the free run.
- Study design and conductreasoning
The sample may have an impact on the transferability of findings.
“Therefore, the sample may also have an impact on the transferability of findings.”
Quote in the paperNot a substantial claim - Interpretationreasoning
When family members experience a lack of support and dementia symptoms increase, a decision for nursing home placement is often made.
“When FMs experience a lack of support and symptoms increase, a decision for nursing home placement is often made.”
Quote in the paperSubstantial claim - Premisecitation
Nursing home staff have an essential role in providing emotional support in reducing burden and depression among family members.
“Nursing home staff have an essential role in providing emotional support in reducing burden and depression among FMs (Müller, Lautenschläger, Meyer, & Stephan, 2017).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Müller, Lautenschläger, Meyer, & Stephan, 2017
Not checked in the free run.
- May combine two claims. 24
- Classified as probably not a substantial claim. 24
- The quote only partly states this claim. 1
May combine two claims.
Findingown dataAll 19 interviewees at first did not realise all the symptoms, or did not see them as genuine.
“The interviewees (n = 19) at first did not realise all the symptoms, or they did not see them as genuine.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe most shocking changes for family members were that their loved one no longer recognised them, could no longer talk to them, and repeated words or the same questions constantly.
“The most shocking for them was that their loved one was no longer recognising them and could no longer talk to them and that they repeated words or the same questions constantly.”
- Also stated in: § Accepted Article · hedged
“Most shocking for them was discovering that the loved one living with dementia sometimes no longer recognised them and repeated the same words and questions.”
Quote in the paperNot a substantial claim- Also stated in: § Accepted Article · hedged
May combine two claims.
Findingown dataMost often family members turned to a primary healthcare team, and they also sought help from various institutions.
“Most often, they turned to a primary healthcare team, and they also sought out help from various institutions.”
- Also stated in: § Accepted Article · plain
“They decided to seek help from their primary healthcare team because the situation was unmanageable.”
Quote in the paperNot a substantial claim- Also stated in: § Accepted Article · plain
May combine two claims.
Findingown dataFourteen family members reported that they had the most problems at night, including night wandering and confusion of night and day.
“Family members (n = 14) pointed out that they had the most problems at night.Night wandering episodes were also presented, and the older person living with dementia began to confuse night and day.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataAll family members expressed dissatisfaction with and insufficient support from their primary healthcare team.
“Dissatisfaction regarding help from the primary healthcare team could be identified from all the FMs' data”
- Also stated in: § Accepted Article · plain
“The FMs expressed that they did not get enough support from their primary healthcare team.”
Quote in the paperSubstantial claim- Also stated in: § Accepted Article · plain
Probably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataWithin the main theme 'Developing the diagnosis', two subthemes were identified: expressed changes and searching for help.
“Within the main theme”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataIf the older person was exposed to various infections, their disease deteriorated.
“If they had been exposed to various infections, their disease deteriorated.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataBehavioural changes led family members to a crisis moment at which they realised they could not take care of their loved one anymore and decided to find help.
“Such behavioural changes lead FMs to the crisis moment.At that point, they realised they could not take care of them anymore.They decided to find some help.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Findingown dataWithin the main theme 'Accommodation process', three subthemes were identified: adjusting, experience, and caring.
“Within the second main theme”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataThe loved ones were no longer reliable in their mobility, and incontinence began to appear.
“They were no longer reliable in their mobility, and incontinence began to appear.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataAll family members showed interest in finding information and searched for it to a significant extent via television, radio and the internet.
“All FMs showed interest in finding information because they searched for it to a significant extent via television, radio and the internet.”
- Also stated in: § Accepted Article · plain
“Based on that, the FMs tried to get pieces of information on the internet and other media about what dementia is and how to care for a person living with dementia.”
Quote in the paperNot a substantial claim- Also stated in: § Accepted Article · plain
May combine two claims.
Findingown dataTwelve family members expect that caring can be even better and that the situation can still improve.
“With this, FMs (n = 12) expect that caring can be even better and that the situation can still improve.”
Quote in the paperNot a substantial claimThe quote only partly states this claim.
Findingown dataOnce family members experience the nursing home placement as the last station for the loved one, it takes some time to accept those feelings.
“Once FMs experience the nursing home placement as the last station for the loved one, it takes some time to accept those feelings.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingown dataDespite emotional challenges associated with placing loved ones in the nursing home, some family members felt that ultimately it enabled them to go on with their lives.
“Despite the emotional challenges associated with placing their loved ones in the nursing home, some FMs felt that ultimately it enabled them to go on with their lives.”
Quote in the paperSubstantial claimMay combine two claims.
FindingcitationFamily members have not received adequate support or assistance from primary healthcare teams, deepening their sense of burden.
“FMs experiences show that they have not received adequate support or assistance from primary healthcare teams, deepening their sense of burden (Cole et al., 2018;Lord et al., 2016).”
- Also stated in: § Conclusions · plain
“In this study, insufficient diagnosis and lack of support at the primary healthcare level were found.”
Quote in the paperSubstantial claim0 of 2 sources checked- cites Cole et al., 2018
Not checked in the free run.
- cites Lord et al., 2016
Not checked in the free run.
- Also stated in: § Conclusions · plain
May combine two claims.
Findingown dataSeven family members noted that the staff were overburdened and believe that there is not enough staff.
“The FMs (n = 7) noted that the staff were overburdened.They believe that there is not enough staff.”
Quote in the paperNot a substantial claimMay combine two claims.
Findingnone givenThe most common reasons were progressive symptoms of dementia and an inability to care at home.
“The most common reasons were progressive symptoms of dementia and an inability to care at home.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenEach stage of data analysis was reinforced using field notes.
“Each stage of data analysis was reinforced using the field notes.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenLine by line coding was performed independently by three researchers, and then all four researchers together.
“line by line coding independently by three researchers, and then all four researchers together”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningThere is insufficient assistance available in Slovenia from voluntary organisations and dementia care services.
“which suggests that there is insufficient assistance available in Slovenia from voluntary organisations and dementia care services.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenAll transcripts were anonymized to protect participants' identities and checked for accuracy.
“All transcripts were anonymized to protect participants' identities and also checked for accuracy.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationData collection ended after 19 interviews when data saturation was reached.
“Data collection ended after 19 interviews started to reached data saturation (Polit & Beck, 2012;Polit & Beck, 2017).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Polit & Beck, 2012
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- cites Polit & Beck, 2017
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Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationThe study followed the Creswell and Creswell (2018) suggestion that the required sample size in qualitative studies is between five and 25 participants.
“However, we followed the Creswell and Creswell (2018) suggestion of the required sample size in qualitative studies between five to 25 participants.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Creswell and Creswell (2018)
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Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductcitationThe consolidated criteria for reporting qualitative research (COREQ) was used.
“The consolidated criteria for reporting qualitative research (COREQ) was used (Tong, Sainsbury, & Craig, 2007).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Tong, Sainsbury, & Craig, 2007
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Study design and conductnone givenAll discrepancies were discussed between authors until a consensus was reached.
“All the discrepancies were discussed between authors until a consensus was reached.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationGraneheim et al. (2014) reported family members' feelings of guilt while being forced to decide about nursing home placement.
“Similarly, Graneheim et al. (2014) reported FMs feelings of guilt while being forced to decide about nursing home placement.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Graneheim et al. (2014)
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningOur findings have significant implications for nursing management and clinical practice.
“Our findings have significant implications for nursing management and clinical practice.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationBehavioural and psychological symptoms of dementia are common.
“Behavioural and psychological symptoms of dementia are common (Resnick et al., 2018), and when they increase, this leads FMs to the crisis moment to decide on nursing home placement.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Resnick et al., 2018
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationVerbeek (2017) stated that cooperation with family, nursing staff and the loved one is essential and a crucial element of person-centred healthcare.
“Verbeek (2017) stated that cooperation with family, nursing staff and the loved one is essential and a crucial element of person-centred healthcare (Chen, Lin, Chen, & Loh, 2017;McCormack & McCance, 2006).”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites Verbeek (2017)
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- cites Chen, Lin, Chen, & Loh, 2017
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- cites McCormack & McCance, 2006
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Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
PremisecitationOther researchers reported fear, loneliness, guilt, sadness, pain and emotional distress among family members of people with dementia.
“Similarly, other researchers also reported fear (Hellström & Torres, 2016;Kristiansen, Normann, Norberg, Fjelltun, & Skaalvik, 2017), loneliness, guilt, sadness (Graneheim et al., 2014), pain and emotional distress (Argyle, Downs, & Tasker, 2010).”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites Hellström & Torres, 2016
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- cites Kristiansen, Normann, Norberg, Fjelltun, & Skaalvik, 2017
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- cites Graneheim et al., 2014
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Classified as probably not a substantial claim. May combine two claims.
Interpretationown dataThis study throws light on an essential aspect of dementia care from the perspective of family members and the lack of support from the primary healthcare team.
“However, this study throws light on an essential aspect of dementia care from the perspective of FMs and the lack of support from the primary healthcare team.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationGraneheim et al. (2014) reported that family members were satisfied when their loved one received good quality of care.
“Graneheim et al. (2014) also reported that FMs were satisfied when their loved one received good quality of care.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Graneheim et al. (2014)
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenTo minimise the impact of subjectivity in the analytical process, all the authors participated in the data analysis to strengthen interpretation and ensure credibility.
“To minimise the impact of subjectivity in the analytical process, all the authors participated in the data analysis to strengthen interpretation and ensure credibility.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
Interpretationnone givenNursing staff greatly influence the life of the older person living with dementia in nursing homes.
“The nursing staff greatly influence the life of the older person living with dementia in nursing homes.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningThe findings of this study can help family members and primary healthcare teams in understanding and coping with nursing home placement decisions for an older person living with dementia.
“The findings of this study can help FMs and primary healthcare teams in understanding and cope with nursing home placement decisions for an older person living with dementia.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationResearch findings frequently reported that professionals showed poor recognition of behavioural and psychological symptoms of dementia and family members' burdens as the most common reasons for care placements of older persons living with dementia.
“Research findings frequently reported that professionals showed poor recognition of behavioural and psychological symptoms of dementia and FMs' burdens as the most common reasons for care placements of older persons living with dementia (Chang & Schneider, 2010;Lord et al., 2016;Toot, Swinson, Devine, Challis, & Orrell, 2017).”
Quote in the paperNot a substantial claim0 of 3 sources checked- cites Chang & Schneider, 2010
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- cites Lord et al., 2016
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- cites Toot, Swinson, Devine, Challis, & Orrell, 2017
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
Study design and conductnone givenThe relevant ethics committees approved the research in Slovenia (038/2018/1273-2/501).
“The relevant ethics committees approved the research in Slovenia (038/2018/1273-2/501).”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
Study design and conductnone givenThis study presents a snapshot of the situation in Slovenia and could be transferable to other countries with similar health systems.
“This study presents a snapshot of the situation in Slovenia and could be transferable to other countries with similar health systems.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationThe most common reasons for placement were the need for professional care, a lack of help and support at the primary healthcare level and other organisations.
“The most common reasons for placement were the need for professional care, a lack of help and support at the primary healthcare level and other organisations (Lord et al., 2016).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Lord et al., 2016
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.
InterpretationcitationReducing family members' burden and postponing transfer to a nursing home can be ensured by appropriate assistance from the primary healthcare team and adequate support of other dementia care services.
“Reducing FMs burden and postponing transfer to a nursing home can be ensured by appropriate assistance from the primary healthcare team and adequate support of other dementia care services.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim. May combine two claims.
Study design and conductreasoningAs this is a qualitative study drawn from interviews with 19 family members of people living with dementia, the results are not generalisable but may be relevant to other family members coping with the decision of nursing home placement and also for primary healthcare team members.
“As this is a qualitative study drawn from interviews with 19 FMs of people living with dementia the results are not generalisable but may be relevant to other FMs coping with the decision of nursing home placement and also for the primary healthcare team members.”
Quote in the paperSubstantial claim
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Each is checked against this paper’s own text: does it say what the citing paper says it does?
Successful transitions were supported by coordinated efforts such as timely follow-up care, consistent referrals, efficient information exchange, personalized care planning, and interprofessional collaboration.
“Successful transitions were supported by coordinated efforts such as timely follow-up care, consistent referrals, efficient information exchange, personalized care planning, and interprofessional collaboration”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Fekonja et al., 2021
The Accepted Article passage recommends continuous, timely support for families and coordination among primary care, social services, and nursing homes. But it does not describe successful transitions achieved through that coordination or specify follow-up care, consistent referrals, information exchange, or personalized care plans. The Conclusions instead report insufficient diagnosis and support at the primary-care level; no page number is available in our copy. (LLM, conf=0.87)
Experimental — accuracy not yet measuredIn collectivist cultures, the moral obligation to care for aging parents at home created strong resistance to institutional care, even when caregiving demands became overwhelming.
“In collectivist cultures, the moral obligation to care for aging parents at home created strong resistance to institutional care, even when caregiving demands became overwhelming (Fekonja et al., 2021; Hanssen et al., 2022; Hanssen & Tran, 2019; Holton et al., 2023; Hui et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Fekonja et al., 2021
In the Accepted Article section (page not specified), the authors report that some family members did not want nursing-home placement but felt forced into it when they could no longer cope with caregiving. The paper does not attribute that reluctance to collectivist culture or a moral obligation to care for aging parents at home. (LLM, conf=0.86)
Experimental — accuracy not yet measuredFamilies described a sense of failure both in relinquishing day-to-day care and in being unable to shield loved ones from institutional environments they felt were not always respectful or safe.
“Families described a sense of failure both in relinquishing day-to-day care and in being unable to shield loved ones from institutional environments they felt were not always respectful or safe (de Vries et al., 2019; Fekonja et al., 2021).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Fekonja et al., 2021
In the Results (Accepted Article; page unavailable), family members describe shame, guilt, and feeling they had disappointed a loved one because they could no longer provide care at home. The paper also reports concerns about understaffing and opportunities to improve care, but not that families felt unable to shield loved ones from nursing homes they considered disrespectful or unsafe; it describes staff as kind and families as reassured by the care provided. (LLM, conf=0.88)
Experimental — accuracy not yet measuredAcceptance was more likely when transitions were planned collaboratively and the person's wishes were acknowledged.
“Acceptance was more likely when transitions were planned collaboratively and the person’s wishes were acknowledged (Ashbourne et al., 2021; Fekonja et al., 2021).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Fekonja et al., 2021
In the discussion (labelled “Accepted Article”; page unavailable), the paper calls cooperation among family, nursing staff and the loved one essential and recommends support during placement decisions. Its “Adjusting” section discusses family members’ acceptance of placement, but it does not say acceptance was more likely after collaborative planning or when the person’s wishes were acknowledged. (LLM, conf=0.79)
Experimental — accuracy not yet measuredMany caregivers felt that existing health care guidance was insufficient and experienced a lack of clear, coordinated information, often needing to "connect the dots" themselves to understand what services were available or how to access them.
“Many caregivers felt that existing health care guidance was insufficient and experienced a lack of clear, coordinated information, often needing to “connect the dots” themselves to understand what services were available or how to access them (Fekonja et al., 2021; Saragosa et al., 2023).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Fekonja et al., 2021
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
Daily visits described as "almost all" but reported as 10.5%
MinorThe reported percentage is about one in ten family members, not almost all of them.
“Almost all interviewed FMs visited their loved one every day”
“(10.5%).”
Education percentages for two participants are too high
MinorTable 2 reports 11.0% for each education category with two of the 19 participants. Two out of 19 is 10.5% to one decimal place, not 11.0%.
Reported 11 · recomputed 10.526316
“| Frequency 5 4 7 3 12 7 11 2 4 2 12 4 3 4 7 | Percentage 26.3 21.0 36.9 15.8 63.2 36.8 57.9 11.0 21.0 11.0 63.2 21.0 15.8 21.0 36.9 |”
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Flagged first, then by citations
Research works printed but not linked: 1
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Cited by
Sorted by citations
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- Authors
- Fekonja, Z., Kmetec, S., Novak, B., McCormack, B., & Mlinar Reljić, N.
- Affiliations
- University of Maribor (SI)
- Splošna Bolnišnica Celje (SI)
- Queen Margaret University (GB)
- Faculty of Health Science University of Maribor Maribor Slovenia
- Corresponding author
- Fekonja, Zvonka
- Kmetec, Sergej
- Novak, Barbara
- McCormack, Brendan
- Venue
- Journal of Nursing Management
- Publisher
- Wiley
- Published
- 2021-02-07
- Volume
- 29
- Issue
- 5
- Pages
- 1284-1292
- ISSN
- 0966-0429 (ISSN-L)
- 1365-2834
- OpenAlex
- W3122597259
- Semantic Scholar
- 09a9ca2ec7f61e9679f29f5c1d425977b588e29b
- Cited by
- 11
- References
- 37
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 1
- FWCI
- 1.25
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- Locations
- Journal of Nursing Management (publishedVersion)
- PubMed (publishedVersion)
- Queen Margaret University Publications Repository (Queen Margaret University) (submittedVersion)
- Funders
- World Health Organization
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- dementia, family caregivers, nursing home admission, family experiences, early diagnosis of dementia, primary care, decision support, behavior change, family support
- MeSH terms
- Dementia, Emotions, Family, Humans, Nursing Homes, Qualitative Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-09.
Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-09.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
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