Qualitative studies
|
Rokstad et al.3636 Rokstad M, McCabe L, Robertson JM, Strandenæs MG, Tretteteig S, Vatne S. Day care for people with dementia: A qualitative study comparing experiences from Norway and Scotland. Dementia (London). 2019;18(4):1393-409., 2017 Norway and Scotland |
To explore and compare the experiences and outcomes of DC services designed for PwD as described by PwD and FC |
Qualitative cross-national descriptive design |
32 PwD-FC Dyads PwD N = 17 in Norway N = 19 in Scotland FC N = 17 in Norway N = 15 in Scotland |
Qualitative interviews |
FC Outcomes • Confidence in the staff, provided 'peace of mind' in the knowledge their relative was being well cared for • Benefit from a respite • In Scotland, FC felt they benefited from being able to stay and talk with staff. PwD Outcomes • Increased wellbeing • Increased social engagement • Improved functioning and mood • Improved relationships with FC • Overall satisfaction with the service. |
**** |
Tretteteig3535 Tretteteig S, Vatne S, Rokstad AMM. The influence of day care centres designed for people with dementia on family caregivers - a qualitative study. BMC Geriatrics (2017) 17(1):5. et al., 2017 Norway |
To provide an extended understanding of the situation of FC and examine to what extent DC can meet their need for support and respite |
Cross-sectional Qualitative descriptive design |
FC N =17 |
In-depth interviews |
FC Outcomes • Relieves FC by meeting the PwD needs for social community, nutrition, physical activity, and structure and variety in everyday life • DC have a positive influence on the relationship between FC and the PwD • Led to a higher quality of time spent together and easier cooperation • Produced some hard feelings and challenging situations • DC gave the FC a feeling of freedom and increased the time available for their own needs, to be social and to work or do practical tasks undisturbed. • Provide the families with a sense of shared responsibility and relief while they are still active in their caregiving role. PwD Outcomes • DC reduces behavioural challenges • Contribute to the postponement of nursing home placement • This result depends on flexible opening hours, high quality of the DC program and regular cooperation with FC. |
**** |
Liu et al.2323 Liu Y, Kim K, Almeida DM, Zarit SH. Daily Fluctuation in Negative Affect for Family Caregivers of Individuals With Dementia. Health Psychology. 2015;34(7):729-40., 2015 USA |
To evaluate the magnitude of FC affective fluctuation and whether this is associated with caregivers' daily experiences, intervention, DC use that affects daily experiences by lowering exposure to care-related stressors, and with other caregiving characteristics |
Cross-sectional Qualitative descriptive design |
FC Users N = 173 |
Face-to-face interview; questionnaires; telephone interviews; Nonspecific Psychological Distress Scale; Daily Inventory of Stressful Events; |
FC Outcomes • Changes the structure and routines of daily caregiving experiences • Provides temporary respite away from caregiving responsibilities • Relieves caregivers' exposure to potentially stressful behavior problems. • This recess prevents accumulation of daily negative affective reactions in both depression and anger. • It may help spouse or older caregivers or caregivers with lower education, and bring down their fluctuation in depression. |
*** |
Zarit et al.2424 Zarit SH, Kim K, Femia EE, Almeida DM, Klein LC. The Effects of Adult Day Services on Family Caregivers' Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study. Gerontologist. 2014;54(4):570-9.., 2014 USA |
To examine the effects of use of DC by FC of PwD on daily stressors, affect, and health symptoms |
Cross-sectional Qualitative descriptive design |
FC Users N = 173 |
Daily telephone interviews; DRB; The Non-Specific Psychological Distress Scale; PANAS; ADL; IADL |
FC Outcomes • Had lower exposure to care-related stressors on DC days, more positive experiences, more noncare stressors, lower anger and impact of noncare stressors on depressive symptoms. |
**** |
Gústafsdóttir3737 Gústafsdóttir M. The Family's Experience of Sharing the Care of a Person with Dementia with the Services in Specialized Day-Care Units. Dement Geriatr Cogn Disord. 2014;4:344-54 2014 Iceland |
To explore the collaboration between families and staff in day-care units caring for elderly subjects suffering from dementia. |
Longitudinal Qualitative Interpretive phenomenological study |
FC N = 8 |
Interviews |
FC Outcomes • All families found the services of specialized day-care units both useful and pleasant • This resource made everyday life much more manageable for all persons involved. |
*** |
Phillipson et al.3939 Phillipson L, Jones SC. Use of day centers for respite by help-seeking caregivers of individuals with dementia. J Gerontol Nurs. 2012;38:24-34., 2012 Australia |
To explore and understand DC use from the perspective of FC. |
Longitudinal, qualitative |
FC - N = 36 (29 users; 7 non-users); (25 spousal and 11 non-spousal). |
Focus groups, semi-structured interviews, dyad interviews |
FC Outcomes • They felt free to engage in other daily and social tasks, and to care for other family and friends. • They valued the opportunity to learn by observing team management strategies with PwD. The FC users had a more positive perception of DC than non-users. PwD Outcomes • The FC believes that PwD benefited from being engaged in positive occupation which enhanced their personhood or sense of self • Had gains from social interaction or mental stimulation. • The DC were perceived as improving the quality of life of the person with dementia. |
*** |
de Jong et al.3232 de Jong JD, Boersma F. Dutch psychogeriatric day-care centers: a qualitative study of the needs and wishes of carers. Int Psychogeriatr. 2009;21:268-77., 2009 Netherlands |
To study the needs and wishes of FC when providing skilled psychogeriatric DC. |
Cross-sectional Qualitative descriptive design |
N = 9 Dyads PwD / FC Co-residents N =4; Living alone N = 4 Nursing home N = 1 |
Semi-structured interviews and focus groups |
FC Outcomes • The expertise of professionals and their relationship with the day-care users were considered important. • The FC need to know the structure and program of the DC • They expect the professionals to play a more active role in providing education, advice and support. |
**** |
Quantitative non-randomised studies
|
Logsdon2222 Logsdon RG, Pike KC, Korte L, Goehring C. Memory Care and Wellness Services: Efficacy of Specialized Dementia Care in Adult Day Services. Gerontologist. 2016;56(2):318-25. et al., 2016 USA |
To evaluate whether MCWS improved quality of life, mood, behavior, or functional status for PwD and whether FC experienced decreased stress, burden, or depression, compared with control dyads |
Longitudinal Quasi-experimental, control group design |
187 PwD-FC dyads Group of users N = 162; Controls non-users N = 25 |
MMSE; QOL-AD; ADL; IADL; RMBPC; CES-D; Screen for Caregiver Burden; PSS. |
FC Outcomes • The MCWS caregivers exhibited significantly less distress over behavior problems, memory and depressive problems, than comparison caregivers. PwD Outcomes • No significant differences were seen between MCWS and comparison dyads at 3 months. After 6 months, MCWS participants exhibited significantly fewer depressive behaviors and other behaviors problems than comparison participants. |
**** |
Kim et al.2525 Kim K, Zarit SH, Femia EE, Savla J. Kin relationship of caregivers and people with dementia: stress and response to intervention. Int J Geriatr Psychiatry. 2012;27:59-66., 2012 USA |
To examine the effects of kin relationship on response to use of DC on feelings of burden, depressive symptoms, and positive affect for FC. |
Longitudinal Quasi-experimental, control group design |
FC N = 341 Users Group N = 182 (Wives = 67 + Daughters = 115) Controls non-users N = 159 (Wives = 64 + Daughters = 95) |
Role overload; CES-D; PANAS; ADL; IADL; RMBP |
FC Outcomes • Kin relationship affected the response to intervention • For depressive symptoms, both wives and daughters had lower scores over time compared to controls. • The wives and daughters had lower feelings of burden over time, but wives' scores dropped only to the level found among controls. • For positive affect, wives using DC showed a considerable decline over time. |
*** |
Cho et al.2727 Cho S, Zarit SH, Chiriboga DA. Wives and daughters: the differential role of day care use in the nursing home placement of cognitively impaired family members. Gerontologist. 2009;49:57-67., 2009 USA |
To examine whether kin relationship affects the timing of nursing home placement for caregivers who enroll a relative into an DC program compared with caregivers not using DC. |
Longitudinal Quasi-experimental, control group design |
FC N = 371 Group users N = 174 Wives 76 + Daughters 98 Controls non-users N = 197 Wives = 65 + Daughters = 132 |
In-person and telephone interviews; IADL; ADL; RMBPC; Role captivity and Role overload Scales; SCL-90; CES-D. |
FC Outcomes • The DC can serve as a stepping stone for institutionalization. For wives, institutionalization was associated with feelings of overworking wives and behavioral problems of husbands • For daughters, the effect of using DC was to delay institutionalization |
*** |
Mossello et al.4040 Mossello E, Caleri V, Razzi E, Di Bari M, Cantini C, Tonon E, et al. Day Care for older dementia patients: favorable effects on behavioral and psychological symptoms and caregiver stress. Int J Geriatr Psychiatry. 2008;23:1066-72., 2008 Italy |
To evaluate the effects of DC on cognitive, functional and behavioral status of PwD and on psychological well-being of FC, compared with nonrandomly matched controls receiving usual home care (HC) |
Longitudinal Quasi-experimental, control group design |
60 Dyads PwD/FC Group users N = 30 Controls non-users N = 30 |
NPI; CBI; MMSE; ADL; IADL; BDI |
FC Outcomes • Burden significantly decreased compared to controls • No significant difference in between-group depressive symptoms change PwD Outcomes • The behavioural and psychological symptoms significantly decreased; • Reduction in psychotropic drugs prescription, whereas this increased in FC. • No significant difference in cognitive and functional changes |
**** |
Droes et al.3333 Dröes RM, Meiland FJM, Schmitz MJ, van Tilburg W. Effect of the Meeting Centres Support Program on informal carers of people with dementia: Results from a multi-centre study. Aging Ment Health. 2006;10(2):112-24., 2006 Netherlands |
To retest the hypothesis that integrated comprehensive family support in the MSCP is more effective for reducing feelings of burden of FC and positively influencing some potential determinants of feelings of burden, than non-integrated support, such as regular DC. Explored the potential effect of the MCSP on the emotional impact that behavioural and psychiatric problems of the PwD have on FC. |
Longitudinal Quasi-experimental, control group design |
FC N = 84 Group MCSP users N = 71 Controls Day-Care users - N = 13 |
GHQ; SCS; JCS; Social Support list; Services list; LS; NPI; ASEP; CSDD; Behaviour Observation Scale for Intramural Psychogeriatrics; PGCMS |
FC Outcomes • After seven months, no effect was found in psychological and psychosomatic symptoms or in the determinants of burden. • The integrated approach proved more effective than regular DC for decreasing psychological and psychosomatic symptoms in lonely FC. • The majority of carers experienced less burden and more professional support. PwD Outcomes • After seven months, significantly fewer persons were institutionalized as compared to the controls patients. |
*** |
Gitlin et al.2828 Gitlin LN, Reever K, Dennis MP, Mathieu E, Hauck WW. Enhancing quality of life of families who use adult day services: Short- and longterm effects of the adult day services plus program. Gerontologist. 2006; 46(5):630-9., 2006 USA |
To evaluate the short (3-month) and long-term (up to 12 months) effects of an innovative intervention, the Adult Day Services Plus (ADS Plus) program. |
Longitudinal Quasi-experimental, control group design |
N = 129 Dyads PwD/FC ADS Plus users N = 67 Controls DC users N = 62 |
Interviews; CES-D; ZBI; Memory and Problem Behaviors Scale; Perceived Change Index; REACH II |
FC Outcomes • The ADS Plus Program provides evidence that DC is care which results in immediate and long-term clinically significant quality-of-life improvements for both the caregiver and impaired elder • Reduction in depressive symptoms • Increased confidence in managing troublesome behaviors • Enhanced overall perceived well-being |
**** |
Droes et al.3434 Droes RM, Breebaart E, Meiland FJ, Van Tilburg W, Mellenbergh GJ. Effect of Meeting Centres Support Program on feelings of competence of family carers and delay of institutionalization of people with dementia. Aging Ment Health. 2004;8:201-11, 2004 Netherlands |
To compare whether the integrated support program (MCS) is more effective for reducing the feelings of burden of FC and positively influencing some determinants of burden experienced, such as behavioral changes, than the support offered by the regular DC. |
Longitudinal Quasi-experimental, control group design |
N = 55 Dyads PwD/FC Group MCS users N = 36 Controls DC users N = 19 |
CSQ; PGCMS; GHQ; LS; FCS; JCS; Social Support list; Services list; ASEP; BCRS; CSDD; Behaviour Observation Scale for Intramural Psychogeriatrics; |
FC outcomes • There was no statistical indication that the MCS Program was more effective for reducing the feeling of overload of FC than the support offered by the regular DC • Participation in the program contributed to an increased sense of competence of FC and postponement of institutionalization. |
*** |
Gaugler et al.3030 Gaugler JE, Jarrott SE, Zarit SH, Stephens MA, Townsend A, Greene R. Adult day service use and reductions in caregiving hours: Effects on stress and psychological wellbeing for dementia caregivers. Int J Geriatr Psychiatry. 2003;18(1):55-62., 2003 USA |
To determine whether DC use interacts with decreases in FC hours, to alleviate caregiver stress and negative mental health over time. |
Longitudinal Quasi-experimental, control group design |
FC N = 400 Group users N = 169 Controls non-users N = 231 |
In-person interviews; Role captivity; Role overload scale; CES-D; SCL-90; RMBPC, IADL, ADL |
FC Outcomes The DC are potentially effective in restructuring caregiving time,providing FC with respite, when compared to non-users, thus leading to decreased feelings of exhaustion. |
*** |
Zarit et al.3131 Zarit SH, Stephens MA, Townsend A, Greene R. Stress reduction for family caregivers: effects of adult day care use. J Gerontol B Psychol Sci Soc Sci. 1998;53:S267-77., 1998 USA |
To evaluate the psychological benefits of DC for FC assisting a relative with dementia |
Longitudinal Quasi-experimental, control group design |
FC N = 324 Group users N =121 Controls non-users N = 203 |
CES-D; Role Captivity; Role Overload scales; Worry and strain; BSI; PANAS |
FC Outcomes • The use of the day center significantly reduced overload, depression and anger compared to controls. PwD Outcomes • No decrease in behavioural problems. |
*** |
Zank et al.4242 Zank S, Schacke C. (2002). Evaluation of geriatric day care units: Effects on patients and caregivers. J Gerontol B Psychol Sci Soc Sci. 2002; 57(4):P348-57., 2002 Germany |
To evaluate the effects of DC on PwD and FC |
Longitudinal Quasi-experimental, control group design |
PwD N = 83 Group users N = 43; Controls non-users N = 40 FC N = 62 Group users N = 40 Control non-users N = 22 |
LSQ; PSS; Self-esteem instrument; MADRS; MMSE; NAI; ADAS; NAO; Family Conflict Scale; Job-Caregiving Conflict Scale; ZBI; CES-D; RMBPC; semi-structured interview |
FC Outcomes • No change in subjective well-being and burden between the groups in the longitudinal follow-up • On a semi-structured interview, the FC of PwD in the treatment group reported substantial positive change due to use of DC • High levels of satisfaction were reported PwD Outcomes • An improvement or stabilization of the subjective wellbeing and dementia symptoms in the treatment group in comparison with the control group • Follow-up data showed a significant decline in health in the control group in comparison with the day care users |
**** |
Quantitative descriptive
|
Kwok et al.3838 Kwok T, Young D, Yip A, F Ho. Effectiveness of day care services for dementia patients and their caregivers Asian J Gerontol Geriatr 2013; 8:9-15., 2013 Hong Kong |
To examine the effectiveness of a dementia-specific DC |
Longitudinal Quantitative descriptive design |
90 Dyads PwD / FC N = 90 |
ZBI; MMSE; CMAI; IADL; BI; CDR; MFAC; BBS; MNA, PWI-ID; BMI |
FC Outcomes • Dementia-specific DC reduced caregiver burden. PwD Outcomes • Maintained cognitive function and quality of life • Self-care ability, mobility and behavioural problems did not improve. |
*** |
Zarit, et al.2626 Zarit SH, Kim K, Femia EE, Almeida DM, Savla J, Molenaar PC. Effects of adult day care on daily stress of caregivers: a within-person approach. J Gerontol B Psychol Sci Soc Sci. 2011;66:538-46., 2011 USA |
To examine the daily assessment of FC on the impact of intervention and possible changes in the primary stressors associated with care, by comparing the days that the PwD were attended by the DC and the days they remained at home |
Longitudinal Quantitative descriptive |
FC - N = 121 |
Daily telephone interviews; DRB; in-home interview; MMSE; ADL; WRB |
FC Outcomes • Total exposure to stressors and stress appraisals decreased significantly over time on • DC days compared with non-DC days. PwD Outcomes • Reduction in behavioral problems during the evenings was significant • Improved sleep immediately following DC use. |
**** |
Mavall et al.4141 Mavall L, Thorslund M. Does day care also provide care for the caregiver? Arch Gerontol Geriatr. 2007;45:137-50., 2007 Sweden |
To evaluate whether the DC is an effective way of resting for caregivers residing and not-residing with their relative with dementia. |
Longitudinal Quantitative descriptive design |
FC N =51 Co-resident group [CR] N= 29; Non-co-resident group [NCR] N = 22 |
CES-D; Likert Scale. |
FC Outcomes • Experienced a rest period • Were less worried and had decrease in care-related stress after four months • Non-co-residing FC whose relative continued in DC had significantly less burden, role captivity and depression than non-co-residing controls |
**** |
Higgins, et al.2929 Higgins M, Koch K, Hynan LS, Carr S, Byrnes K, Weiner MF. Impact of an activities-based adult dementia care program. Neuropsychiatr Dis Treat. 2005;1(2):165-9., 2005 USA |
To evaluate whether a once-a-week activity-based DC program for dementia patients combined with 17 educational sessions for caregivers held at the same facility, over one year, increased quality of life (QOL), lowered levels of patient behavioral disturbance, and stimulated greater use of community-based resources |
Longitudinal Quantitative descriptive design |
Dyads PwD / FC Users - N = 21 |
MMSE; BRSD; QOL-AD; standardized questionnaire |
FC Outcomes • Caregivers reported their own QOL as unchanged. PwD Outcomes • Cognitive function and behavioral symptoms worsened significantly Caregivers reported significant decrease in QOL for their loved ones, but patients reported essentially no change in QOL • The DC experience appeared to increase morale and decrease a sense of isolation for patients and caregivers alike. |
*** |