The development of videoconference-based support for people living with rare dementias and their carers: Protocol for a 3-phase support group evaluation

Background:
People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic.

Objective:
We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups.

Methods:
We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed.

Results:
The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions.

Conclusions:
The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population.

Toms GR, Clare L, Nixon J, Quinn C. A systematic narrative review of support groups for people with dementia. Int
Psychogeriatr 2015 Sep;27(9):1439-1465. [doi: 10.1017/S1041610215000691] [Medline: 25990373]
2. Chien LY, Chu H, Guo JL, Liao YM, Chang LI, Chen CH, et al. Caregiver support groups in patients with dementia: a
meta-analysis. Int J Geriatr Psychiatry 2011 Oct;26(10):1089-1098. [doi: 10.1002/gps.2660] [Medline: 21308785]
3. Leung P, Orrell M, Orgeta V. Social support group interventions in people with dementia and mild cognitive impairment:
a systematic review of the literature. Int J Geriatr Psychiatry 2015 Jan;30(1):1-9. [doi: 10.1002/gps.4166] [Medline:
24990344]
4. Banbury A, Parkinson L, Gordon S, Wood D. Implementing a peer-support programme by group videoconferencing for
isolated carers of people with dementia. J Telemed Telecare 2019 Oct;25(9):572-577. [doi: 10.1177/1357633X19873793]
[Medline: 31631761]
5. Hopwood J, Walker N, McDonagh L, Rait G, Walters K, Iliffe S, et al. Internet-based interventions aimed at supporting
family caregivers of people with dementia: systematic review. J Med Internet Res 2018 Jun 12;20(6):e216 [FREE Full text]
[doi: 10.2196/jmir.9548] [Medline: 29895512]
6. Kovaleva M, Blevins L, Griffiths PC, Hepburn K. An online program for caregivers of persons living with dementia: lessons
learned. J Appl Gerontol 2019 Feb;38(2):159-182. [doi: 10.1177/0733464817705958] [Medline: 28460557]
7. Marziali E, Garcia LJ. Dementia caregivers' responses to 2 Internet-based intervention programs. Am J Alzheimers Dis
Other Demen 2011 Feb;26(1):36-43 [FREE Full text] [doi: 10.1177/1533317510387586] [Medline: 21282276]
8. O'Connell ME, Crossley M, Cammer A, Morgan D, Allingham W, Cheavins B, et al. Development and evaluation of a
telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias.
Dementia (London) 2014 May;13(3):382-395. [doi: 10.1177/1471301212474143] [Medline: 24339063]
9. Dam AE, de Vugt ME, Klinkenberg IP, Verhey FR, van Boxtel MP. A systematic review of social support interventions
for caregivers of people with dementia: are they doing what they promise? Maturitas 2016 Mar;85:117-130. [doi:
10.1016/j.maturitas.2015.12.008] [Medline: 26857890]
10. Victor CR, Rippon I, Nelis SM, Martyr A, Litherland R, Pickett J, IDEAL programme team. Prevalence and determinants
of loneliness in people living with dementia: findings from the IDEAL programme. Int J Geriatr Psychiatry 2020
Aug;35(8):851-858. [doi: 10.1002/gps.5305] [Medline: 32281151]
11. Bruinsma J, Peetoom K, Bakker C, Boots L, Verhey F, de Vugt M. 'They simply do not understand': a focus group study
exploring the lived experiences of family caregivers of people with frontotemporal dementia. Aging Ment Health 2022
Feb;26(2):277-285. [doi: 10.1080/13607863.2020.1857697] [Medline: 33325262]
12. Dourado MC, Laks J, Kimura NR, Baptista MA, Barca ML, Engedal K, et al. Young-onset Alzheimer dementia: a comparison
of Brazilian and Norwegian carers' experiences and needs for assistance. Int J Geriatr Psychiatry 2018 Jun;33(6):824-831.
[doi: 10.1002/gps.4717] [Medline: 28370411]
13. Kaiser S, Panegyres PK. The psychosocial impact of young onset dementia on spouses. Am J Alzheimers Dis Other Demen
2006;21(6):398-402 [FREE Full text] [doi: 10.1177/1533317506293259] [Medline: 17267371]
14. Harvey RJ, Roques P, Fox NC, Rossor MN. Non-Alzheimer dementias in young patients. Br J Psychiatry 1996
Mar;168(3):384-385. [doi: 10.1192/bjp.168.3.384b] [Medline: 8833704]
15. Rare Dementia Support. 2022. URL: https://www.raredementiasupport.org/ [accessed 2021-11-01]
16. Allen J, Oyebode JR, Allen J. Having a father with young onset dementia: the impact on well-being of young people.
Dementia 2009 Dec 04;8(4):455-480. [doi: 10.1177/1471301209349106]
17. Gelman C, Rhames K. "I have to be both mother and father": the impact of young-onset dementia on the partner's parenting
and the children's experience. Dementia (London) 2020 Apr;19(3):676-690. [doi: 10.1177/1471301218783542] [Medline:
29996672]
18. Svanberg E, Spector A, Stott J. The impact of young onset dementia on the family: a literature review. Int Psychogeriatr
2011 Apr;23(3):356-371. [doi: 10.1017/S1041610210001353] [Medline: 20735892]
19. van Vliet D, de Vugt ME, Bakker C, Koopmans RT, Verhey FR. Impact of early onset dementia on caregivers: a review.
Int J Geriatr Psychiatry 2010 Nov;25(11):1091-1100. [doi: 10.1002/gps.2439] [Medline: 20957692]
https://www.researchprotocols.org/2022/7/e35376 JMIR Res Protoc 2022 | vol. 11 | iss. 7 | e35376 | p. 10
(page number not for citation purposes)
JMIR RESEARCH PROTOCOLS Waddington et al
XSL•FO
RenderX
20. Diehl J, Monsch AU, Aebi C, Wagenpfeil S, Krapp S, Grimmer T, et al. Frontotemporal dementia, semantic dementia, and
Alzheimer's disease: the contribution of standard neuropsychological tests to differential diagnosis. J Geriatr Psychiatry
Neurol 2005 Mar;18(1):39-44. [doi: 10.1177/0891988704272309] [Medline: 15681627]
21. Nicolaou PL, Egan SJ, Gasson N, Kane RT. Identifying needs, burden, and distress of carers of people with Frontotemporal
dementia compared to Alzheimer’s disease. Dementia 2010 Mar 26;9(2):215-235. [doi: 10.1177/1471301209354024]
22. Uflacker A, Edmondson MC, Onyike CU, Appleby BS. Caregiver burden in atypical dementias: comparing frontotemporal
dementia, Creutzfeldt-Jakob disease, and Alzheimer's disease. Int Psychogeriatr 2016 Feb;28(2):269-273. [doi:
10.1017/S1041610215001647] [Medline: 26435062]
23. van Vliet D, de Vugt ME, Bakker C, Pijnenburg YA, Vernooij-Dassen MJ, Koopmans RT, et al. Time to diagnosis in
young-onset dementia as compared with late-onset dementia. Psychol Med 2013 Feb;43(2):423-432. [doi:
10.1017/S0033291712001122] [Medline: 22640548]
24. Ryoo N, Pyun JM, Baek MJ, Suh J, Kang MJ, Wang MJ, et al. Coping with dementia in the middle of the COVID-19
pandemic. J Korean Med Sci 2020 Nov 02;35(42):e383 [FREE Full text] [doi: 10.3346/jkms.2020.35.e383] [Medline:
33140593]
25. Tousi B. Dementia care in the time of COVID-19 pandemic. J Alzheimers Dis 2020;76(2):475-479. [doi:
10.3233/JAD-200461] [Medline: 32651326]
26. Wang H, Li T, Barbarino P, Gauthier S, Brodaty H, Molinuevo JL, et al. Dementia care during COVID-19. Lancet 2020
Apr 11;395(10231):1190-1191 [FREE Full text] [doi: 10.1016/S0140-6736(20)30755-8] [Medline: 32240625]
27. Suárez-González A, Harding E, Zimmerman N, Hoare Z, Brotherhood E, Crutch S. The impact of the first UK Covid-19
lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey.
medRxiv Preprint posted online December 20, 2020. [doi: 10.1101/2020.12.18.20248455]
28. Suárez-González A, Zimmermann N, Waddington C, Wood O, Harding E, Brotherhood E, et al. Non-memory led dementias:
care in the time of covid-19. BMJ 2020 Jun 30;369:m2489. [doi: 10.1136/bmj.m2489] [Medline: 32606068]
29. Cuffaro L, Di Lorenzo F, Bonavita S, Tedeschi G, Leocani L, Lavorgna L. Dementia care and COVID-19 pandemic: a
necessary digital revolution. Neurol Sci 2020 Aug;41(8):1977-1979 [FREE Full text] [doi: 10.1007/s10072-020-04512-4]
[Medline: 32556746]
30. Goodman-Casanova JM, Dura-Perez E, Guzman-Parra J, Cuesta-Vargas A, Mayoral-Cleries F. Telehealth home support
during COVID-19 confinement for community-dwelling older adults with mild cognitive impairment or mild dementia:
survey study. J Med Internet Res 2020 May 22;22(5):e19434 [FREE Full text] [doi: 10.2196/19434] [Medline: 32401215]
31. Hoffman DA. Increasing access to care: telehealth during COVID-19. J Law Biosci 2020 Jun 16;7(1):lsaa043 [FREE Full
text] [doi: 10.1093/jlb/lsaa043] [Medline: 32843985]
32. Gentry MT, Lapid MI, Clark MM, Rummans TA. Evidence for telehealth group-based treatment: a systematic review. J
Telemed Telecare 2019 Jul;25(6):327-342. [doi: 10.1177/1357633X18775855] [Medline: 29788807]
33. Czaja SJ, Loewenstein D, Schulz R, Nair SN, Perdomo D. A videophone psychosocial intervention for dementia caregivers.
Am J Geriatr Psychiatry 2013 Nov;21(11):1071-1081. [doi: 10.1016/j.jagp.2013.02.019] [Medline: 23831174]
34. Hales SA, Fossey J. Caring For Me and You: the co-production of a computerised cognitive behavioural therapy (cCBT)
package for carers of people with dementia. Aging Ment Health 2018 Oct;22(10):1287-1294. [doi:
10.1080/13607863.2017.1348475] [Medline: 28691520]
35. Walden A, Garvin L, Smerek M, Johnson C. User-centered design principles in the development of clinical research tools.
Clin Trials 2020 Dec;17(6):703-711. [doi: 10.1177/1740774520946314] [Medline: 32815381]
36. Support Group Facilitation Guide. Mental Health America. 2016. URL: https://www.mhanational.org/sites/default/files/
MHA%20Support%20Group%20Facilitation%20Guide%202016.pdf [accessed 2020-05-01]
37. Alzheimer's Australia. Exploring the Needs of Younger People with Dementia in Australia: Report to the Australian
Government. Department of Health and Ageing, Australian Government. 2007. URL: https://catalogue.nla.gov.au/Record/
4299602 [accessed 2021-01-17]
38. Stamou V, La Fontaine J, Gage H, Jones B, Williams P, O'Malley M, et al. Services for people with young onset dementia:
the 'Angela' project national UK survey of service use and satisfaction. Int J Geriatr Psychiatry 2021 Mar;36(3):411-422.
[doi: 10.1002/gps.5437] [Medline: 32979287]
39. Mayrhofer A, Mathie E, McKeown J, Bunn F, Goodman C. Age-appropriate services for people diagnosed with young
onset dementia (YOD): a systematic review. Aging Ment Health 2018 Aug;22(8):927-935. [doi:
10.1080/13607863.2017.1334038] [Medline: 28621549]
40. Kobiske KR, Bekhet AK, Garnier-Villarreal M, Frenn M. Predeath grief, resourcefulness, and perceived stress among
caregivers of partners with young-onset dementia. West J Nurs Res 2019 Jul;41(7):973-989. [doi:
10.1177/0193945918806689] [Medline: 30343648]
41. Adams KB, Sanders S. Alzheimer's caregiver differences in experience of loss, grief reactions and depressive symptoms
across stage of disease: a mixed-method analysis. Dementia 2004 Jun 1;3(2):195-210. [doi: 10.1177/1471301204042337]
42. Holley CK, Mast BT. The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist 2009
Jun;49(3):388-396. [doi: 10.1093/geront/gnp061] [Medline: 19386826]
https://www.researchprotocols.org/2022/7/e35376 JMIR Res Protoc 2022 | vol. 11 | iss. 7 | e35376 | p. 11
(page number not for citation purposes)
JMIR RESEARCH PROTOCOLS Waddington et al
XSL•FO
RenderX
43. Lindauer A, Harvath TA. Pre-death grief in the context of dementia caregiving: a concept analysis. J Adv Nurs 2014
Oct;70(10):2196-2207. [doi: 10.1111/jan.12411] [Medline: 24702153]
44. Marwit SJ, Meuser TM. Development of a short form inventory to assess grief in caregivers of dementia patients. Death
Stud 2005 Apr;29(3):191-205. [doi: 10.1080/07481180590916335] [Medline: 15816111]
45. Brotherhood EV, Stott J, Windle G, Barker S, Culley S, Harding E, et al. Protocol for the rare dementia support impact
study: RDS impact. Int J Geriatr Psychiatry 2020 Aug;35(8):833-841. [doi: 10.1002/gps.5253] [Medline: 31876030]
46. Reisberg B, Ferris SH, de Leon MJ, Crook T. The Global Deterioration Scale for assessment of primary degenerative
dementia. Am J Psychiatry 1982 Sep;139(9):1136-1139. [doi: 10.1176/ajp.139.9.1136] [Medline: 7114305]
47. Johnson J, Culverwell A, Hulbert S, Robertson M, Camic PM. Museum activities in dementia care: using visual analog
scales to measure subjective wellbeing. Dementia (London) 2017 Jul;16(5):591-610. [doi: 10.1177/1471301215611763]
[Medline: 26468054]
48. Hollis G, Westbury C, Lefsrud L. Extrapolating human judgments from skip-gram vector representations of word meaning.
Q J Exp Psychol (Hove) 2017 Aug;70(8):1603-1619. [doi: 10.1080/17470218.2016.1195417] [Medline: 27251936]
49. Warriner AB, Kuperman V, Brysbaert M. Norms of valence, arousal, and dominance for 13,915 English lemmas. Behav
Res Methods 2013 Dec;45(4):1191-1207. [doi: 10.3758/s13428-012-0314-x] [Medline: 23404613]
50. Pennebaker JW, Boyd RL, Jordan K, Blackburn K. The development and psychometric properties of LIWC2015. The
University of Texas at Austin. 2015. URL: https://repositories.lib.utexas.edu/bitstream/handle/2152/31333/LIWC...
_LanguageManual.pdf [accessed 2021-05-04]
51. Wang YC, Kraut R, Levine JM. To stay or leave?: the relationship of emotional and informational support to commitment
in online health support groups. In: Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work.
2012 Presented at: CSCW '12; February 11-15, 2012; Seattle, WA, USA p. 833-842 URL: https://doi.org/10.1145/2145204.
2145329 [doi: 10.1145/2145204.2145329]
52. Thompson CM, Crook B, Love B, Macpherson CF, Johnson R. Understanding how adolescents and young adults with
cancer talk about needs in online and face-to-face support groups. J Health Psychol 2016 Nov;21(11):2636-2646. [doi:
10.1177/1359105315581515] [Medline: 25921477]
53. Arango I, Miranda E, Sánchez Ferrer JC, Fresán A, Reyes Ortega MA, Vargas AN, et al. Changes in facial emotion
expression during a psychotherapeutic intervention for patients with borderline personality disorder. J Psychiatr Res 2019
Jul;114:126-132. [doi: 10.1016/j.jpsychires.2019.04.026] [Medline: 31071663]
54. Fuhriman A, Drescher S, Hanson E, Henrie R, Rybicki W. Refining the measurement of curativeness: an empirica approach. Small Group Behav 1986 May 1;17(2):186-201. [doi: 10.1177/104649648601700204]
55. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005 Nov;15(9):1277-1288.
[doi: 10.1177/1049732305276687] [Medline: 16204405]
56. Cutrona CE, Suhr JA. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res 1992
Apr 1;19(2):154-174. [doi: 10.1177/009365092019002002]
57. Suhr JA, Cutrona CE, Krebs KK, Jensen SL. The social support behavior code. In: Kerig PK, Baucom DH, editors. Couple
Observational Coding Systems. Milton Park, UK: Routledge; 2004.
58. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006 Jan;3(2):77-101. [doi:
10.1191/1478088706qp063oa]
59. The Magenta Book: guidance notes for policy evaluation and analysis. HM Treasury. 2020. URL: https://dera.ioe.ac.uk/
10521/1/complete_Magenta_tcm6-8611.pdf [accessed 2021-05-04]
60. McIntosh E, Baba C, Botha W. Cost–benefit analysis for applied public health economic evaluation. In: Edwards RT,
McIntosh E, editors. Applied Health Economics for Public Health Practice and Research. Oxford, UK: Oxford University
Press; 2019.
61. Methods for the development of NICE public health guidance (third edition). National Institute for Health and Care
Excellence. 2012 Sep 26. URL: https://www.nice.org.uk/process/pmg4/chapter/incorporating-health-ec... [accessed
2021-05-04]
62. The green book: appraisal and evaluation in central government. HM Treasury. 2022. URL: https://assets.publishing.service
.gov.uk/government/uploads/system/uploads/attachment_data/file/938046/The_Green_Book_2020.pdf [accessed 2021-05-04]
63. Husereau D, Drummond M, Petrou S, Carswell C, Moher D, Greenberg D, CHEERS Task Force. Consolidated health
economic evaluation reporting standards (CHEERS) statement. Int J Technol Assess Health Care 2013 Apr;29(2):117-122.
[doi: 10.1017/S0266462313000160] [Medline: 23587340]
64. Crutch S, Herron D, Pickett J, Rosser S, Rossor M, Created Out of Mind team. Inspired by chance: valuing patients' informal
contributions to research. BMJ 2020 Dec 14;371:m4478. [doi: 10.1136/bmj.m4478] [Medline: 33318028]
65. Crutch SJ, Yong KX, Peters A, Ocal D, Kaski D, Gonzalez AS, et al. Contributions of patient and citizen researchers to
'Am I the right way up?' study of balance in posterior cortical atrophy and typical Alzheimer's disease. Dementia (London)
2018 Nov;17(8):1011-1022. [doi: 10.1177/1471301218789296] [Medline: 30373456]
66. O'Connell ME, Vellani S, Robertson S, O'Rourke HM, McGilton KS. Going from zero to 100 in remote dementia research:
a practical guide. J Med Internet Res 2021 Jan 27;23(1):e24098 [FREE Full text] [doi: 10.2196/24098] [Medline: 33468448]
67. The National Brain Appeal. URL: https://www.nationalbrainappeal.org/ [accessed 2022-06-28]