Adaptation and feasibility of START online, a multicomponent intervention for Australian carers of people with dementia: a pilot randomised controlled trial
Michelle Kelly
A * , Kaylene Kilham A , Alison Walter A , Karen Bell-Weinberg A , Gill Livingston B and Briony Dow C D
A
B
C
D
Abstract
There are more than 400 000 Australians living with dementia and an estimated 200 000 carers who provide unpaid or informal care for a person with dementia. Around a third of those live in regional and rural Australia. The objective of this study was to test the feasibility and acceptability of the adapted telehealth STrAtegies for RelaTives (START) program within the Australian healthcare context.
A two-armed, randomised controlled pilot trial was conducted. Twenty-eight family carers were assigned to the START 8-week manualised coping program or cognitive behaviour therapy (CBT) delivered in a university psychology clinic. Carers completed pre- and post-intervention questionnaires to determine the acceptability of the program. Standardised measures of mood and perceived carer burden were also administered to explore evidence for limited efficacy using Reliable Change Indices.
Eighteen carers were allocated to the START program and 10 to the CBT program. At completion, 10 of 13 commencers in START completed, whereas four of eight eligible CBT carers completed. START carers reported higher overall satisfaction and acceptance of the intervention compared to carers who underwent CBT. Furthermore, the telehealth modality was shown to be a practical and acceptable method of intervention delivery, and satisfaction was rated highly (8.5/10). Referral to and demand for the program proved the largest challenge. Improvement in mood was indicated for some carers who completed START.
These findings indicate preliminary evidence for aspects of feasibility of the START intervention for supporting carers in their caring roles via telehealth delivery. Further investigation is needed to determine intervention efficacy for the treatment of mental health symptomology via telehealth. Any future trial examining dementia carers should first establish strong referral pathways and linkages with primary healthcare and diagnostic services.
Australian and New Zealand Clinical Trials Registry (ACTRN12617000413325).
Keywords: carers, carer support program, cognitive behaviour therapy, dementia, e-health, feasibility, START, telehealth.
References
Acton GJ, Kang J (2001) Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing & Health 24(5), 349-360.
| Crossref | Google Scholar | PubMed |
Andersson G, Paxling B, Wiwe M, Vernmark K, Felix CB, Lundborg L, et al. (2012) Therapeutic alliance in guided internet-delivered cognitive behavioural treatment of depression, generalized anxiety disorder and social anxiety disorder. Behaviour Research and Therapy 50(9), 544-550.
| Crossref | Google Scholar | PubMed |
Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale: An updated literature review. Journal of Psychosomatic Research 52(2), 69-77.
| Crossref | Google Scholar | PubMed |
Bowen DJ, Kreuter M, Spring B, Cofta-Woerpel L, Linnan L, Weiner D, et al. (2009) How we design feasibility studies. American Journal of Preventive Medicine 36(5), 452-457.
| Crossref | Google Scholar | PubMed |
Bradford N, Caffery L, Smith A (2016) Telehealth services in rural and remote Australia: a systematic review of models of care and factors influencing success and sustainability. Rural and Remote Health 16(4), 4268.
| Crossref | Google Scholar |
Brodaty H, Green A, Koschera A (2003) Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society 51(5), 657-664.
| Crossref | Google Scholar | PubMed |
Cooke DD, McNally L, Mulligan KT, Harrison MJG, Newman SP (2001) Psychosocial interventions for caregivers of people with dementia: a systematic review. Aging & Mental Health 5(2), 120-135.
| Crossref | Google Scholar |
Coon DW, Thompson L, Steffen A, Sorocco K, Gallagher-Thompson D (2003) Anger and depression management: psychoeducational skill training interventions for women caregivers of a relative with dementia. Gerontologist 43(5), 678-689.
| Crossref | Google Scholar | PubMed |
Cooper C, Selwood A, Blanchard M, Walker Z, Blizard R, Livingston G (2010) The determinants of family carers’ abusive behaviour to people with dementia: results of the CARD study. Journal of Affective Disorders 121(1–2), 136-142.
| Crossref | Google Scholar | PubMed |
Crawford JR, Henry JD, Taylor EP, Crombie CM (2001) Normative data for the HADS from a large non‐clinical sample. British Journal of Clinical Psychology 40(4), 429-434.
| Crossref | Google Scholar |
Cuijpers P (2005) Depressive disorders in caregivers of dementia patients: A systematic review. Aging & Mental Health 9(4), 325-330.
| Crossref | Google Scholar | PubMed |
Czaja SJ, Rubert MP (2002) Telecommunications technology as an aid to family caregivers of persons with dementia. Psychosomatic Medicine 64(3), 469-476.
| Crossref | Google Scholar | PubMed |
Dickinson C, Dow J, Gibson G, Hayes L, Robalino S, Robinson L (2017) Psychosocial intervention for carers of people with dementia: what components are most effective and when? A systematic review of systematic reviews. International Psychogeriatrics 29(1), 31-43.
| Crossref | Google Scholar | PubMed |
Dow B, Moore K, Scott P, Ratnayeke A, Wise K, Sims J, Hill K (2008) Rural carers online: a feasibility study. Australian Journal of Rural Health 16(4), 221-225.
| Crossref | Google Scholar | PubMed |
Eddison N, Leone E, Healy A, Royse C, Chockalingam N (2022) The potential impact of allied health professional telehealth consultations on health inequities and the burden of treatment. International Journal for Equity in Health 21(1), 91.
| Crossref | Google Scholar | PubMed |
Eldridge SM, Chan CL, Campbell MJ, Bond CM, Hopewell S, Thabane L, Lancaster GA (2016) CONSORT 2010 statement: extension to randomised pilot and feasibility trials. BMJ 355, i5239.
| Crossref | Google Scholar | PubMed |
Etters L, Goodall D, Harrison BE (2008) Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners 20(8), 423-428.
| Crossref | Google Scholar | PubMed |
Furlong KE, Wuest J (2008) Self-care behaviors of spouses caring for significant others with Alzheimer’s disease: the emergence of self-care worthiness as a salient condition. Qualitative Health Research 18(12), 1662-1672.
| Crossref | Google Scholar | PubMed |
Gilhooly KJ, Gilhooly MLM, Sullivan MP, McIntyre A, Wilson L, Harding E, et al. (2016) A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr 16(1), 106.
| Crossref | Google Scholar | PubMed |
Gitlin LN, Belle SH, Burgio LD, Czaja SJ, Mahoney D, Gallagher-Thompson D, et al. (2003) Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow-up. Psychology and Aging 18(3), 361-374.
| Crossref | Google Scholar | PubMed |
Greenwood N, Smith R (2015) Barriers and facilitators for male carers in accessing formal and informal support: A systematic review. Maturitas 82(2), 162-169.
| Crossref | Google Scholar | PubMed |
Haro JM, Kahle-Wrobleski K, Bruno G, Belger M, Dell’Agnello G, Dodel R, et al. (2014) Analysis of burden in caregivers of people with Alzheimer’s disease using self-report and supervision hours. Journal of Nutrician, Health and Aging 18(7), 677-684.
| Crossref | Google Scholar | PubMed |
Hébert R, Bravo G, Préville M (2010) Reliability, Validity and Reference Values of the Zarit Burden Interview for Assessing Informal Caregivers of Community-Dwelling Older Persons with Dementia. Canadian Journal on Aging 19(4), 494-507.
| Crossref | Google Scholar |
Hoe J, Katona C, Orrell M, Livingston G (2007) Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. International Journal of Geriatric Psychiatry 22(10), 1031-1036.
| Crossref | Google Scholar | PubMed |
Hollon SD, Stewart MO, Strunk D (2006) Enduring effects for cognitive behavior therapy in the treatment of depression and anxiety. Annual Review of Psychology 57, 285-315.
| Crossref | Google Scholar | PubMed |
Jacobson NS, Truax P (1991) Clinical significance: a statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting and Clinical Psychology 59(1), 12-19.
| Crossref | Google Scholar | PubMed |
Julious SA (2005) Sample size of 12 per group rule of thumb for a pilot study. Pharmaceutical Statistics 4(4), 287-291.
| Crossref | Google Scholar |
Kiropoulos LA, Klein B, Austin DW, Gilson K, Pier C, Mitchell J, Ciechomski L (2008) Is internet-based CBT for panic disorder and agoraphobia as effective as face-to-face CBT? Journal of Anxiety Disorders 22(8), 1273-1284.
| Crossref | Google Scholar | PubMed |
Kishita N, Laidlaw K (2017) Cognitive behaviour therapy for generalized anxiety disorder: Is CBT equally efficacious in adults of working age and older adults? Clinical Psychology Review 52, 124-136.
| Crossref | Google Scholar | PubMed |
Lancaster GA, Dodd S, Williamson PR (2004) Design and analysis of pilot studies: recommendations for good practice. Journal of Evaluation in Clinical Practice 10(2), 307-312.
| Crossref | Google Scholar | PubMed |
Laver K, Liu E, Clemson L, Davies O, Gray L, Gitlin LN, Crotty M (2020) Does Telehealth Delivery of a Dyadic Dementia Care Program Provide a Noninferior Alternative to Face-To-Face Delivery of the Same Program? A Randomized, Controlled Trial. American Journal of Geriatric Psychiatry 28(6), 673-682.
| Crossref | Google Scholar | PubMed |
Li R, Cooper C, Barber J, Rapaport P, Griffin M, Livingston G (2014) Coping strategies as mediators of the effect of the START (strategies for RelaTives) intervention on psychological morbidity for family carers of people with dementia in a randomised controlled trial. Journal of Affective Disorders 168, 298-305.
| Crossref | Google Scholar | PubMed |
Linde K, Rücker G, Sigterman K, Jamil S, Meissner K, Schneider A, Kriston L (2015) Comparative effectiveness of psychological treatments for depressive disorders in primary care: network meta-analysis. BMC Family Practice 16, 103.
| Crossref | Google Scholar | PubMed |
Livingston G, Barber J, Rapaport P, Knapp M, Griffin M, Romeo R, et al. (2014) START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technology Assessment 18(8), 1-242.
| Crossref | Google Scholar | PubMed |
Livingston G, Manela M, O’Keeffe A, Rapaport P, Cooper C, Knapp M, et al. (2020) Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial. The British Journal of Psychiatry 216(1), 35-42.
| Crossref | Google Scholar | PubMed |
Loi SM, Tropea J, Gaffy E, Panayiotou A, Capon H, Chiang J, et al. (2022) START-online: acceptability and feasibility of an online intervention for carers of people living with dementia. Pilot and Feasibility Studies 8(1), 41.
| Crossref | Google Scholar | PubMed |
López-López JA, Davies SR, Caldwell DM, Churchill R, Peters TJ, Tallon D, et al. (2019) The process and delivery of CBT for depression in adults: a systematic review and network meta-analysis. Psychological Medicine 49(12), 1937-1947.
| Crossref | Google Scholar | PubMed |
Mahoney R, Regan C, Katona C, Livingston G (2005) Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. American Journal of Geriatric Psychiatry 13(9), 795-801.
| Crossref | Google Scholar |
Marziali E, Donahue P, Crossin G (2018) Caring for Others: Internet Health Care Support Intervention for Family Caregivers of Persons with Alzheimer’s, Stroke, or Parkinson’s Disease. Families in Society: The Journal of Contemporary Social Services 86(3), 375-383.
| Crossref | Google Scholar |
Morley S, Dowzer C (2014) Manual for the Leeds Reliable Change Indicator: Simple Excel(tm) applications for the analysis of individual patient and group data. University of Leeds, Leeds, UK. Available at https://dclinpsych.leeds.ac.uk/wpcontent/uploads/sites/26/2018/09/Manual‐for‐Leeds‐RCI‐CSC‐calculators.pdf
Netto NR, Jenny GYN, Philip YLK (2009) Growing and gaining through caring for a loved one with dementia. Dementia 8(2), 245-261.
| Crossref | Google Scholar |
Neville C, Beattie E, Fielding E, MacAndrew M (2015) Literature review: use of respite by carers of people with dementia. Health & Social Care in the Community 23(1), 51-63.
| Crossref | Google Scholar | PubMed |
Okumura Y, Ichikura K (2014) Efficacy and acceptability of group cognitive behavioral therapy for depression: A systematic review and meta-analysis. Journal of Affective Disorders 164, 155-164.
| Crossref | Google Scholar | PubMed |
Parker D, Mills S, Abbey J (2008) Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. International Journal of Evidence-Based Healthcare 6(2), 137-172.
| Crossref | Google Scholar | PubMed |
Pihlaja S, Stenberg JH, Joutsenniemi K, Mehik H, Ritola V, Joffe G (2018) Therapeutic alliance in guided internet therapy programs for depression and anxiety disorders - A systematic review. Internet Interventions 11, 1-10.
| Crossref | Google Scholar | PubMed |
Pinquart M, Sörensen S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging 18(2), 250-267.
| Crossref | Google Scholar | PubMed |
Pinquart M, Sörensen S (2006) Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics 18(4), 577-595.
| Crossref | Google Scholar | PubMed |
Prince M, Knapp M, Guerchet M, McCrone P, Prina M, Comas‐Herrera M, Wittenberg A, Adelaja R, Hu B, King B, Rehill D, Salimkumar D (2014) Dementia UK: Update. Alzheimer’s Society. Available at http://www.alzheimers.org.uk/dementiauk
Schirmer J. (2017) Carers in regional Australia: 2016 regional wellbeing survey report. Health Research Institute & Institute for Applied Ecology, University of Canberra. Available at https://www.canberra.edu.au/research/institutes/health‐research‐institute/regionalwellbeing‐survey/survey‐results/reports/2016‐reports/Carers‐report‐ONLINE‐10‐July‐2017.pdf
Scott JL, Dawkins S, Quinn MG, Sanderson K, Elliott K-EJ, Stirling C, et al. (2016) Caring for the carer: a systematic review of pure technology-based cognitive behavioral therapy (TB-CBT) interventions for dementia carers. Aging & Mental Health 20(8), 793-803.
| Crossref | Google Scholar | PubMed |
Selwood A, Johnston K, Katona C, Lyketsos C, Livingston G (2007) Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders 101(1–3), 75-89.
| Crossref | Google Scholar | PubMed |
Seng BK, Luo N, Ng WY, Lim J, Chionh HL, Goh J, Yap P (2010) Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. Annals of the Academy of Medicine, Singapore 39, 758-763.
| Crossref | Google Scholar |
Sim J, Lewis M (2012) The size of a pilot study for a clinical trial should be calculated in relation to considerations of precision and efficiency. Journal of Clinical Epidemiology 65(3), 301-308.
| Crossref | Google Scholar | PubMed |
Somenahalli S (2015) Key transport and mobility issues facing seniors: evidence from Adelaide. National Seniors Productive Ageing Centre. Available at https://nationalseniors.com.au/uploads/04151097PAC_KeyTransportAndMobilityIssues_Report%20Final.pdf
Sommerlad A, Manela M, Cooper C, Rapaport P, Livingston G (2014) START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention. BMJ Open 4(6), e005273.
| Crossref | Google Scholar | PubMed |
Stagg B, Larner AJ (2015) Zarit Burden Interview: pragmatic study in a dedicated cognitive function clinic. Progress in Neurology and Psychiatry 19(4), 23-27.
| Crossref | Google Scholar |
Stiles-Shields C, Kwasny MJ, Cai X, Mohr DC (2014) Therapeutic alliance in face-to-face and telephone-administered cognitive behavioral therapy. Journal of Consulting and Clinical Psychology 82(2), 349-354.
| Crossref | Google Scholar | PubMed |
Temple JB, Dow B (2018) The unmet support needs of carers of older Australians: prevalence and mental health. International Psychogeriatrics 30(12), 1849-1860.
| Crossref | Google Scholar | PubMed |
Thabane L, Ma J, Chu R, Cheng J, Ismaila A, Rios LP, et al. (2010) A tutorial on pilot studies: the what, why and how. BMC Medical Research Methodology 10, 1.
| Crossref | Google Scholar | PubMed |
Torp S, Hanson E, Hauge S, Ulstein I, Magnusson L (2008) A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway. Health & Social Care in the Community 16(1), 75-85.
| Crossref | Google Scholar | PubMed |
Vaganian L, Bussmann S, Gerlach AL, Kusch M, Labouvie H, Cwik JC (2020) Critical consideration of assessment methods for clinically significant changes of mental distress after psycho‐oncological interventions. International Journal of Methods in Psychiatric Research 29(2), e1821.
| Crossref | Google Scholar | PubMed |
van Gaans D, Dent E (2018) Issues of accessibility to health services by older Australians: a review. Public Health Reviews 39, 20.
| Crossref | Google Scholar | PubMed |
Walter A, Kilham K, Dow B, Rapaport P, Livingston G, Kelly M (in press) Feasibility of a Telehealth Intervention for Dementia Carers in Regional and Rural Australia.
| Google Scholar |
Webb K, Schroder TA, Gresswell DM (2019) Service users’ first accounts of experiencing endings from a psychological service or therapy: A systematic review and meta-ethnographic synthesis. Psychology and Psychotherapy: Theory, Research and Practice 92(4), 584-604.
| Crossref | Google Scholar | PubMed |
Wilz G, Soellner R (2015) Evaluation of a Short-Term Telephone-Based Cognitive Behavioral Intervention for Dementia Family Caregivers. Clinical Gerontologist 39(1), 25-47.
| Crossref | Google Scholar |
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67(6), 361-370.
| Crossref | Google Scholar | PubMed |
