Hearing their voice: A systematic review of dementia family caregivers' needs
Journal article
McCabe, Marita Patricia, You, Emily and Tatangelo, Gemma Louise. (2016). Hearing their voice: A systematic review of dementia family caregivers' needs. The Gerontologist. 56(5), pp. e70 - e88. https://doi.org/10.1093/geront/gnw078
| Authors | McCabe, Marita Patricia, You, Emily and Tatangelo, Gemma Louise |
|---|---|
| Abstract | Purpose: The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers’ needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia. Design and methods: We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia. Results: Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers’ personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers’ physical and psychological health and the need to manage caregivers’ own lives. Implications: The findings have important implications for the development of interventions that comprehensively address caregivers’ individual needs. Caregivers’ unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted. |
| Keywords | community dwelling; dementia caregiving; immediate families; perceived needs; synthesis of qualitative studies |
| Year | 2016 |
| Journal | The Gerontologist |
| Journal citation | 56 (5), pp. e70 - e88 |
| Publisher | Oxford University Press |
| ISSN | 0016-9013 |
| Digital Object Identifier (DOI) | https://doi.org/10.1093/geront/gnw078 |
| Scopus EID | 2-s2.0-84994504547 |
| Page range | e70 - e88 |
| Research Group | Institute for Health and Ageing |
| Publisher's version | File Access Level Controlled |
| Place of publication | United States of America |
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El-Choueifati, Nisrine, Purcell, Alison, McCabe, Patricia, Heard, Robert and Munro, Natalie. (2014). An initial reliability and validity study of the Interaction, Communication, and Literacy Skills Audit. International Journal of Speech-Language Pathology. 16(3), pp. 260 - 272. https://doi.org/10.3109/17549507.2014.882988My Road Ahead study protocol: A randomised controlled trial of an online psychological intervention for men following treatment for localised prostate cancer
Wootten, Addie, Abbott, Jo-Anne, Chisholm, Katherine, Austin, David, Klein, Britt, McCabe, Marita, Meyer, Denny, Costello, Anthony and Murphy, Declan. (2014). My Road Ahead study protocol: A randomised controlled trial of an online psychological intervention for men following treatment for localised prostate cancer. BMC Cancer. 14(1), pp. 1 - 9. https://doi.org/10.1186/1471-2407-14-83A test of the resource security and the body mass index reference point hypotheses of body dissatisfaction amongst adolescents in eight countries
Mellor, David, Fuller-Tyszkiewicz, Matthew, McCabe, Marita Patricia, Ricciardelli, Lina, Skouteris, Helen and Mussap, Alexander. (2014). A test of the resource security and the body mass index reference point hypotheses of body dissatisfaction amongst adolescents in eight countries. Ethnicity and Health. 19(5), pp. 548 - 564. https://doi.org/10.1080/13557858.2013.857761Towards an integrative attachment-based model of relationship functioning
Karantzas, Gery C., Feeney, Judith A., Gonclaves, Celia V. and McCabe, Marita P.. (2014). Towards an integrative attachment-based model of relationship functioning. British Journal of Psychology. 105(3), pp. 413 - 434. https://doi.org/10.1111/bjop.12047A prospective examination of depression, anxiety and stress throughout pregnancy
Rallis, Sofia, Skouteris, Helen, McCabe, Marita Patricia and Milgrom, Jeannette. (2014). A prospective examination of depression, anxiety and stress throughout pregnancy. Women and Birth. 27(4), pp. e36 - e42. https://doi.org/10.1016/j.wombi.2014.08.002An Update of the International Society of Sexual Medicine's Guidelines for the Diagnosis and Treatment of Premature Ejaculation (PE)
Althof, Stanley, McMahon, Chris, Waldinger, Marcel, Serefoglu, Ege Can, Shindel, Alan, Adaikan, Ganesan, Becher, Edgardo, Dean, John, Giuliano, Francois, Hellstrom, Wayne, Giraldi, Annamaria, Glina, Sydney, Incrocci, Luca, Jannni, Emmanuele, McCabe, Marita Patricia, Parish, Sharon, Rowland, David, Segraves, Taylor, Sharlip, Ira and Torres, Luiz Otavio. (2014). An Update of the International Society of Sexual Medicine's Guidelines for the Diagnosis and Treatment of Premature Ejaculation (PE). Journal of Sexual Medicine. 11(6), pp. 1392 - 1422. https://doi.org/10.1111/jsm.12504Psychosocial factors associated with male sexual difficulties
McCabe, Marita and Connaughton, Catherine. (2014). Psychosocial factors associated with male sexual difficulties. Journal of Sex Research. 51(1), pp. 31 - 42. https://doi.org/10.1080/00224499.2013.789820My Road Ahead study protocol: A randomised controlled trial of an online psychological intervention for men following treatment for localised prostate cancer
Wootten, Addie, Abbott, Jo-Anne, Chisholm, Katherine, Austin, David, Klein, Britt, McCabe, Marita, Meyer, Denny, Costello, Anthony and Murphy, Declan. (2014). My Road Ahead study protocol: A randomised controlled trial of an online psychological intervention for men following treatment for localised prostate cancer. BMC Cancer. 14(83), pp. 1 - 9. https://doi.org/10.1186/1471-2407-14-83Recruitment evaluation of a preschooler obesity-prevention intervention
Skouteris, Helen, Hill, Briony, McCabe, Marita Patricia, Swinburn, Boyd, Sacher, Paul and Chadwick, Paul. (2014). Recruitment evaluation of a preschooler obesity-prevention intervention. Early Child Development and Care. 184(5), pp. 649 - 657. https://doi.org/10.1080/03004430.2013.808196An online, mindfulness-based, cognitive-behavioral therapy for female sexual difficulties : Impact on relationship functioning
Hucker, Alice and McCabe, Marita Patricia. (2014). An online, mindfulness-based, cognitive-behavioral therapy for female sexual difficulties : Impact on relationship functioning. Journal of Sex and Marital Therapy. 40(6), pp. 561 - 576. https://doi.org/10.1080/0092623X.2013.796578Addressing risk factors of overweight and obesity among adolescents in out-of-home care : The Health Eating and Active Living (HEAL) study
Skouteris, Helen, Fuller-Tyszkiewicz, Matthew, McCabe, Marita Patricia, Cox, Rachael, Miller, Robyn, Jones, Amanda, Omerogullari, Stella and Morrison, Kate. (2014). Addressing risk factors of overweight and obesity among adolescents in out-of-home care : The Health Eating and Active Living (HEAL) study. International Journal of Adolescence and Youth. 19(4), pp. 536 - 548. https://doi.org/10.1080/02673843.2012.762407How the Prevalence Rates of Male Sexual Dysfunction Vary Using Different Criteria
McCabe, Marita Patricia and Connaughton, Catherine. (2014). How the Prevalence Rates of Male Sexual Dysfunction Vary Using Different Criteria. International Journal of Sexual Health. 26(3), pp. 229 - 237. https://doi.org/10.1080/19317611.2013.873104An evidence-based unified definition of lifelong and acquired premature ejaculation : Report of the second international society for sexual medicine Ad Hoc committee for the definition of premature ejaculation
Serefoglu, Ege Can, McMahon, Chris, Waldinger, Marcel, Althof, Stanley, Shindel, Alan, Adaikan, Ganesan, Becher, Edgardo, Dean, John, Giuliano, Francois, Hellstrom, Wayne, Giraldi, Annamaria, Glina, Sydney, Incrocci, Luca, Jannini, Emmanuele, McCabe, Marita Patricia, Parish, Sharon, Rowland, David, Segraves, R. Taylor, Sharlip, Ira and Torres, Luiz Otavio. (2014). An evidence-based unified definition of lifelong and acquired premature ejaculation : Report of the second international society for sexual medicine Ad Hoc committee for the definition of premature ejaculation. Journal of Sexual Medicine. 11(6), pp. 1423 - 1441. https://doi.org/10.1111/jsm.12524A bi-directional relationship between obesity and health-related quality of life: Evidence from the longitudinal AusDiab study
Cameron, Ege, McMahon, Chris, Waldinger, Marcel, Althof, Stanley, Shindel, Alan, Adaikan, Ganesan, Becher, Edgardo, Dean, John, Giuliano, Francois, Hellstrom, Wayne, Giraldi, Annamaria, Jannini, Emmanuele and McCabe, Marita. (2014). A bi-directional relationship between obesity and health-related quality of life: Evidence from the longitudinal AusDiab study. International Journal of Obesity. 11(6), pp. 1423 - 1441. https://doi.org/10.1038/ijo.2011.103Development, feasibility and usability of an online psychological intervention for men with prostate cancer : My Road Ahead
Wootten, Addie, Abbott, Jo-Anne, Chisholm, Katherine, Austin, David, Klein, Britt, McCabe, Marita, Murphy, Declan and Costello, Anthony. (2014). Development, feasibility and usability of an online psychological intervention for men with prostate cancer : My Road Ahead. Internet Interventions. 1(4), pp. 188 - 195. https://doi.org/10.1016/j.invent.2014.10.001The transition to motherhood : Towards a broader understanding of perinatal distress
Rallis, Sofia, Skouteris, Helen, McCabe, Marita and Milgrom, Jeannette. (2014). The transition to motherhood : Towards a broader understanding of perinatal distress. Women and Birth. 27, pp. 68 - 71. https://doi.org/10.1016/j.wombi.2013.12.004A randomized control trial to evaluate the beyondblue depression training program: Does it lead to better recognition of depression?
McCabe, Alice and McCabe, Marita. (2014). A randomized control trial to evaluate the beyondblue depression training program: Does it lead to better recognition of depression? International Journal of Geriatric Psychiatry. 40(1), pp. 58 - 68. https://doi.org/10.1002/gps.3809Barriers to the detection and management of depression by palliative care professional carers among their patients : Perspectives from professional carers and patients' family members
Mellor, David, McCabe, Marita, Davison, Tanya, Goldhammer, Denisa and Hallford, David. (2013). Barriers to the detection and management of depression by palliative care professional carers among their patients : Perspectives from professional carers and patients' family members. American Journal of Hospice and Palliative Care. 30(1), pp. 12 - 20. https://doi.org/10.1177/1049909112438705An evaluation of a national program to implement the Cornell Scale for Depression in Dementia into routine practice in aged care facilities
Davison, Matthew, Skouteris, Helen and McCabe, Marita. (2013). An evaluation of a national program to implement the Cornell Scale for Depression in Dementia into routine practice in aged care facilities. International Psychogeriatrics. 31(7), pp. 706 - 713. https://doi.org/10.1017/S1041610211002146Participants' perceptions of a knowledge-brokering strategy to facilitate evidence-informed policy-making in Fiji
Waqa, Gade, Mavoa, Helen, Snowdon, Wendy, Moodie, Marjory, Nadakuitavuki, Rigieta, McCabe, Marita and Swinburn, Boyd. (2013). Participants' perceptions of a knowledge-brokering strategy to facilitate evidence-informed policy-making in Fiji. BMC Public Health. 13(725), pp. 1 - 9. https://doi.org/10.1186/1471-2458-13-725Biopsychosocial correlates of weight status perception in Australian adolescents
Fredrickson, Julia, Kremer, Peter, Swinburn, Boyd, de Silva-Sanigorski, Andrea and McCabe, Marita Patricia. (2013). Biopsychosocial correlates of weight status perception in Australian adolescents. Body Image. 10(4), pp. 552 - 557. https://doi.org/10.1016/j.bodyim.2013.06.008Biopsychosocial correlates of weight status perception in Australian adolescents
Fredrickson, Julia, Kremer, Peter, Swinburn, Boyd, de Silva-Sanigorski, Andrea and McCabe, Marita. (2013). Biopsychosocial correlates of weight status perception in Australian adolescents. Body Image. 10(4), pp. 552 - 557. https://doi.org/10.1016/j.bodyim.2013.06.008Staff-focused interventions to increase referrals for depression in aged care facilities : A cluster randomized controlled trial
Davison, Tanya, Karantzas, Gery, Mellor, David, McCabe, Marita Patricia and Mrkic, Dejan. (2013). Staff-focused interventions to increase referrals for depression in aged care facilities : A cluster randomized controlled trial. Aging and Mental Health. 17(4), pp. 449 - 455. https://doi.org/10.1080/13607863.2012.738412Prevalence and severity of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Chinese : Findings from the Shanghai three districts study
Haibo, Xue, Pin, Ng Tze, Shifu, Xiao, Chao, Chen, Guorong, Meng, Xuejue, Lu, Shiming, Bu, Wenli, Fang, Jun, Lv, Mingyuan, Zhang and McCabe, Marita. (2013). Prevalence and severity of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Chinese : Findings from the Shanghai three districts study. Aging and Mental Health. 17(6), pp. 748 - 752. https://doi.org/10.1080/13607863.2013.781116A qualitative evaluation of online chat groups for women completing a psychological intervention for female sexual dysfunction
Hucker, Alice and McCabe, Marita. (2013). A qualitative evaluation of online chat groups for women completing a psychological intervention for female sexual dysfunction. Journal of Sex and Marital Therapy. 40(1), pp. 58 - 68. https://doi.org/10.1080/0092623X.2012.675020A randomized control trial to evaluate the beyondblue depression training program: Does it lead to better recognition of depression?
McCabe, Marita Patricia, Karantzas, Gery, Mrkic, Dejan, Mellor, David and Davison, Tanya. (2013). A randomized control trial to evaluate the beyondblue depression training program: Does it lead to better recognition of depression? International Journal of Geriatric Psychiatry. 28(3), pp. 221 - 226. https://doi.org/10.1002/gps.3809The role of cultural values and religion on views of body size and eating practices among adolescents from Fiji, Tonga, and Australia
McCabe, Marita, Waqa, Gade, Dev, Anjileena, Cama, Tilema and Swinburn, Boyd. (2013). The role of cultural values and religion on views of body size and eating practices among adolescents from Fiji, Tonga, and Australia. British Journal of Health Psychology. 18(2), pp. 383 - 394. https://doi.org/10.1111/j.2044-8287.2012.02090.xPrevalence of women's sexual desire problems : What criteria do we use?
McCabe, Marita and Goldhammer, Denisa. (2013). Prevalence of women's sexual desire problems : What criteria do we use? Archives of Sexual Behavior: an interdisciplinary research journal. 42(6), pp. 1073 - 1078. https://doi.org/10.1007/s10508-013-0107-zBody image and gestational weight gain : a prospective study
Hill, Briony, Skouteris, Helen, McCabe, Marita and Fuller-Tyszkiewicz, Matthew. (2013). Body image and gestational weight gain : a prospective study. Journal of Midwifery & Womens Health. 58(2), pp. 189 - 194. https://doi.org/10.1111/j.1542-2011.2012.00227.xAttrition from an internet-based treatment program for female sexual dysfunction : Who is best treated with this approach?
McCabe, Marita and Jones, Lisa. (2013). Attrition from an internet-based treatment program for female sexual dysfunction : Who is best treated with this approach? Psychology, Health & Medicine. 18(5), pp. 612 - 618. https://doi.org/10.1080/13548506.2013.764460Training and experience of nurses in responding to alcohol misuse in rural communities
Kennedy, Alison, Mellor, David, McCabe, Marita, Ricciardelli, Lina, Brumby, Susan, Head, Alexandra and Mercer-Grant, Catherine. (2013). Training and experience of nurses in responding to alcohol misuse in rural communities. Public Health Nursing. 30(4), pp. 332 - 342. https://doi.org/10.1111/phn.12029Stigma toward mental illness : A cross-cultural comparison of Taiwanese, Chinese immigrants to Australia and Anglo-Australians
Mellor, David, Carne, Lucy, Shen, Yu-Chun, McCabe, Marita and Wang, Liwei. (2013). Stigma toward mental illness : A cross-cultural comparison of Taiwanese, Chinese immigrants to Australia and Anglo-Australians. Journal of Cross-Cultural Psychology. 44(3), pp. 352 - 364. https://doi.org/10.1177/0022022112451052The role of cultural values and religion on views of body size and eating practices among adolescents from Fiji, Tonga, and Australia
McCabe, Marita Patricia, Waqa, Gade, Dev, Anjileena, Cama, Tilema and Swinburn, Boyd. (2013). The role of cultural values and religion on views of body size and eating practices among adolescents from Fiji, Tonga, and Australia. British Journal of Health Psychology. 18(2), pp. 383 - 394. https://doi.org/10.1111/j.2044-8287.2012.02090.xStaff-focused interventions to increase referrals for depression in aged care facilities : A cluster randomized controlled trial
Davison, Tanya, Karantzas, Gery, Mellor, David, McCabe, Marita and Mrkic, Dejan. (2013). Staff-focused interventions to increase referrals for depression in aged care facilities : A cluster randomized controlled trial. Aging and Mental Health. 17(4), pp. 449 - 455. https://doi.org/10.1080/13607863.2012.738412Which body features are associated with female adolescents' body dissatisfaction? A cross-cultural study in Australia, China and Malaysia
Mellor, David, Waterhouse, Monique, Mamat, Norul, Xu, Xiaoyan, Cochrane, Jamie, McCabe, Marita and Ricciardelli, Lina. (2013). Which body features are associated with female adolescents' body dissatisfaction? A cross-cultural study in Australia, China and Malaysia. Body Image. 10(1), pp. 54 - 61. https://doi.org/10.1016/j.bodyim.2012.10.002Prevalence and severity of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Chinese : Findings from the Shanghai three districts study
Haibo, Xue, Shifu, Xiao, Pin, Ng, Chao, Chen, Guorong, Meng, Xuejue, Lu, Shiming, Bu, Wenli, Fang, Jun, Lv, Mingyuan, Zhang and McCabe, Marita. (2013). Prevalence and severity of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Chinese : Findings from the Shanghai three districts study. Aging and Mental Health. 17(6), pp. 748 - 752. https://doi.org/10.1080/13607863.2013.781116Knowledge brokering between researchers and policymakers in Fiji to develop policies to reduce obesity: A process evaluation
Waqa, Gade, Mavoa, Helen, Snowdon, Wendy, Moodie, Marjory, Schultz, Jimaima, McCabe, Marita Patricia, Kremer, Peter and Swinburn, Boyd. (2013). Knowledge brokering between researchers and policymakers in Fiji to develop policies to reduce obesity: A process evaluation. Implementation Science. 8(74), pp. 1 - 11. https://doi.org/10.1186/1748-5908-8-74Evaluation of an alcohol intervention training program for nurses in rural Australia
Mellor, David, McCabe, Marita Patricia, Ricciardelli, Lina, Brumby, Susan, Head, Alexandra, Mercer-Grant, Catherine and Kennedy, Alison. (2013). Evaluation of an alcohol intervention training program for nurses in rural Australia. Journal of Research in Nursing. 18(6), pp. 561 - 575. https://doi.org/10.1177/1744987112465883Development and validation of the Exercise Dependence and Elite Athletes Scale
McNamara, Justin and McCabe, Marita. (2013). Development and validation of the Exercise Dependence and Elite Athletes Scale. Performance Enhancement & Health. 2(1), pp. 30 - 36. https://doi.org/10.1016/j.peh.2012.11.001Does practice make perfect? Results from a Chinese feasibility study of cognitive remediation in schizophrenia
Byrne, Linda, Peng, Daihui, McCabe, Marita, Mellor, David, Zhang, Jie, Zhang, Tianhong, Huang, Jia and Xu, Yifeng. (2013). Does practice make perfect? Results from a Chinese feasibility study of cognitive remediation in schizophrenia. Neuropsychological Rehabilitation. 23(4), pp. 580 - 596. https://doi.org/10.1080/09602011.2013.799075Stigma Toward Mental Illness : A Cross-Cultural Comparison of Taiwanese, Chinese Immigrants to Australia and Anglo-Australians
Mellor, David, Carne, Lucy, Shen, Yu-Chun, McCabe, Marita Patricia and Wang, Liwei. (2013). Stigma Toward Mental Illness : A Cross-Cultural Comparison of Taiwanese, Chinese Immigrants to Australia and Anglo-Australians. Journal of Cross-Cultural Psychology. 44(3), pp. 352 - 364. https://doi.org/10.1177/0022022112451052Participants' perceptions of a knowledge-brokering strategy to facilitate evidence-informed policy-making in Fiji
Waqa, Gade, Mavoa, Helen, Snowdon, Wendy, Moodie, Marjory, Nadakuitavuki, Rigieta, McCabe, Marita and Swinburn, Boyd. (2013). Participants' perceptions of a knowledge-brokering strategy to facilitate evidence-informed policy-making in Fiji. BMC Public Health. 13(725), pp. 1 - 9. https://doi.org/10.1186/1471-2458-13-725Knowledge brokering between researchers and policymakers in Fiji to develop policies to reduce obesity : A process evaluation
Waqa, Gade, Mavoa, Helen, Snowdon, Wendy, Moodie, Marj, Schultz, Jimaima, McCabe, Marita, Kremer, Peter and Swinburn, Boyd. (2013). Knowledge brokering between researchers and policymakers in Fiji to develop policies to reduce obesity : A process evaluation. Implementation Science. 8(1), pp. 1 - 11. https://doi.org/10.1186/1748-5908-8-74Evaluation of an alcohol intervention training program for nurses in rural Australia
Mellor, David, McCabe, Marita, Ricciardelli, Lina, Brumby, Susan, Head, Alexandra, Mercer-Grant, Catherine and Kennedy, Alison. (2013). Evaluation of an alcohol intervention training program for nurses in rural Australia. Journal of Research in Nursing. 18(6), pp. 561 - 575. https://doi.org/10.1177/1744987112465883A qualitative study of preadolescent boys' and girls' body image: Gendered ideals and sociocultural influences
Tatangelo, Gemma Louise and Ricciardelli, Lina A.. (2013). A qualitative study of preadolescent boys' and girls' body image: Gendered ideals and sociocultural influences. Body Image. 10(4), pp. 591 - 598. https://doi.org/10.1016/j.bodyim.2013.07.006Body Image and Gestational Weight Gain: A Prospective Study
Hill, Briony, Skouteris, Helen, McCabe, Marita Patricia and Fuller-Tyszkiewicz, Matthew. (2013). Body Image and Gestational Weight Gain: A Prospective Study. Journal of Midwifery & Womens Health. 58(2), pp. 189 - 194. https://doi.org/10.1111/j.1542-2011.2012.00227.xAttrition from an Internet-based treatment program for female sexual dysfunction : Who is best treated with this approach?
McCabe, Marita Patricia and Jones, Lisa. (2013). Attrition from an Internet-based treatment program for female sexual dysfunction : Who is best treated with this approach? Psychology, Health & Medicine. 18(5), pp. 612 - 618. https://doi.org/10.1080/13548506.2013.764460Barriers to the Detection and Management of Depression by Palliative Care Professional Carers Among Their Patients : Perspectives From Professional Carers and Patients' Family Members
Mellor, David, McCabe, Marita Patricia, Davison, Tanya E., Goldhammer, Denisa L. and Hallford, David J.. (2013). Barriers to the Detection and Management of Depression by Palliative Care Professional Carers Among Their Patients : Perspectives From Professional Carers and Patients' Family Members. American Journal of Hospice and Palliative Care. 30(1), pp. 12 - 20. https://doi.org/10.1177/1049909112438705Biopsychosocial factors related to depression in aged care residents
Davison, Tanya, McCabe, Marita, Knight, Tess and Mellor, David. (2012). Biopsychosocial factors related to depression in aged care residents. Journal of Affective Disorders. 142(1-3), pp. 290 - 296. https://doi.org/10.1016/j.jad.2012.05.019