‘The oxygen of shared experience’: exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias

Objectives: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD).

Methods: Twenty-five family carers of PLWRD participated in a series of ongoing online peer supportgroups on the theme of ‘Independence and Identity’. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr’s (2004) Social Support Behaviour Code (SSBC).

Results: Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories – ‘Experiential Support’ and ‘Community Support’ – and novel support behaviours including ‘Advocacy and Collective Action’ and ‘Uses Humour’. The SSBC code ‘Relationship’ appeared to be of central importance.

Conclusions: This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.

Banbury, A., Parkinson, L., Gordon, S., & Wood, D. (2019). Implementing a
peer-support programme by group videoconferencing for isolated carers
of people with dementia. Journal of Telemedicine and Telecare, 25(9),
572–577. https://doi.org/10.1177/1357633X19873793
Bekris, L. M., Yu, C. E., Bird, T. D., & Tsuang, D. W. (2010). Genetics of Alzheimer
disease. Journal of Geriatric Psychiatry and Neurology, 23(4), 213–227.
https://doi.org/10.1177/0891988710383571
Brotherhood, E. V., Stott, J., Windle, G., Barker, S., Culley, S., Harding, E., Camic,
P. M., Caufield, M., Ezeofor, V., Hoare, Z., McKee-Jackson, R., Roberts, J.,
Sharp, R., Suarez-Gonzalez, A., Sullivan, M. P., Tudor, Edwards, R., Walton,
J., Waddington, C., Winrow, E., & Crutch, S. J. (2020). Protocol for the rare
dementia support impact study: RDS impact. International Journal of
Geriatric Psychiatry, 35(8), 833–841. https://doi.org/10.1002/gps.5253
Brunnström, H., Gustafson, L., Passant, U., & Englund, E. (2009).
Prevalence of dementia subtypes: A 30-year retrospective survey of
neuropathological reports. Archives of Gerontology and Geriatrics,
49(1), 146–149.
Carter, G., Monaghan, C., & Santin, O. (2020). What is known from the existing
literature about peer support interventions for carers of individuals
living with dementia: A scoping review. Health & Social Care in the
Community, 28(4), 1134–1151. https://doi.org/10.1111/hsc.12944
Carter, J. (2022). Prevalence of all cause young onset dementia and time
lived with dementia: Analysis of primary care health records. Journal of
Dementia Care, 30(3), 1–5.
Carter, J., Oyebode, J. R., & Koopmans, R. T. C. M. (2018). Young-onset dementia
and the need for specialist care: A national and international
perspective. Aging & Mental Health, 22(4), 468–473. https://doi.org/10.1
080/13607863.2016.1257563
Clare, L., Rowlands, J. M., & Quin, R. (2008). Collective strength: The impact
of developing a shared social identity in early-stage dementia.
Dementia, 7(1), 9–30. https://doi.org/10.1177/1471301207085365
Coulson, N. S., & Greenwood, N. (2012). Families affected by childhood
cancer: An analysis of the provision of social support within online support
groups. Child: Care, Health and Development, 38(6), 870–877.
https://doi.org/10.1111/j.1365-2214.2011.01316.x
Crutch, S. J., Schott, J. M., Rabinovici, G. D., Murray, M., Snowden, J. S., Flier,
W. M., Dickerson, B. C., Vandenberghe, R., Ahmed, S., Bak, T. H., Boeve, B.
F., Butler, C., Cappa, S. F., Ceccaldi, M., Souza, L. C., Dubois, B., Felician, O.,
Galasko, D., Graff-Radford, J., … Fox, N. C, Alzheimer’s Association
ISTAART Atypical Alzheimer’s Disease and Associated Syndromes
Professional Interest Area (2017). Consensus classification of posterior
cortical atrophy. Alzheimer’s & Dementia, 13(8), 870–884. https://doi.
org/10.1016/j.jalz.2017.01.014
Cutrona, C. E., & Suhr, J. A. (1992). Controllability of stressful events and
satisfaction with spouse support behaviors. Communication Research,
19(2), 154–174. https://doi.org/10.1177/009365092019002002
Dam, A. E., Van Boxtel, M. P., Rozendaal, N., Verhey, F. R., & de Vugt, M. E.
(2017). Development and feasibility of Inlife: A pilot study of an online
social support intervention for informal caregivers of people with dementia.
PLoS One, 12(9), e0183386. https://doi.org/10.1371/journal.
pone.0183386
Diefenbeck, C. A., Klemm, P. R., & Hayes, E. R. (2014). Emergence of Yalom’s
therapeutic factors in a peer-led, asynchronous, online support group
for family caregivers. Issues in Mental Health Nursing, 35(1), 21–32.
https://doi.org/10.3109/01612840.2013.836260
Greaves, C. V., & Rohrer, J. D. (2019). An update on genetic frontotemporal
dementia. Journal of Neurology, 266(8), 2075–2086.
Harding, E., Sullivan, M. P., Woodbridge, R., Yong, K. X., McIntyre, A., Gilhooly,
M. L., Gilhooly, K. J., & Crutch, S. J. (2018). ‘ Because my brain isn’t as active
as it should be, my eyes don’t always see’: A qualitative exploration of
the stress process for those living with posterior cortical atrophy. BMJ
Open, 8(2), e018663. https://doi.org/10.1136/bmjopen-2017-018663
Hill, C. E., Knox, S., Thompson, B. J., Williams, E. N., Hess, S. A., & Ladany, N.
(2005). Consensual qualitative research: An update. Journal of
Counseling Psychology, 52(2), 196–205. https://doi.org/10.1037/0022-
0167.52.2.196
Hogan, D. B., Jetté, N., Fiest, K. M., Roberts, J. I., Pearson, D., Smith, E. E.,
Roach, P., Kirk, A., Pringsheim, T., & Maxwell, C. J. (2016). The prevalence
and incidence of frontotemporal dementia: A systematic review.
Canadian Journal of Neurological Sciences / Journal Canadien Des
Sciences Neurologiques, 43(S1), S96–S109. https://doi.org/10.1017/
cjn.2016.25
Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content
analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.
org/10.1177/1049732305276687
Karnatz, T., Monsees, J., Wucherer, D., Michalowsky, B., Zwingmann, I.,
Halek, M., Hoffmann, W., & Thyrian, J. R. (2021). Burden of caregivers of
patients with frontotemporal lobar degeneration–a scoping review.
International Psychogeriatrics, 33(9), 891–911. https://doi.org/10.1017/
S1041610219000176
Keyes, S. E., Clarke, C. L., Wilkinson, H., Alexjuk, E. J., Wilcockson, J., Robinson,
L., Reynolds, J., McClelland, S., Corner, L., & Cattan, M. (2016). “We’re all
thrown in the same boat…”: A qualitative analysis of peer support in
dementia care. Dementia, 15(4), 560–577. https://doi.org/10.1177/
1471301214529575
Koedam, E. L., Lauffer, V., Van der Vlies, A. E., Van der Flier, W. M., Scheltens,
P., & Pijnenburg, Y. A. (2010). Early-versus late-onset Alzheimer’s disease:
More than age alone. Journal of Alzheimer’s Disease, 19(4), 1401–1408.
https://doi.org/10.3233/JAD-2010-1337
Kvello-Alme, M., Bråthen, G., White, L. R., & Sando, S. B. (2019). The prevalence
and subtypes of young onset dementia in central Norway: A population-
based study. Journal of Alzheimer’s Disease, 69(2), 479–487.
https://doi.org/10.3233/JAD-181223
LogMeIn Inc. (2016). GoToMeeting [Computer Software].
Marshall, C. R., Hardy, C. J. D., Volkmer, A., Russell, L. L., Bond, R. L., Fletcher,
P. D., Clark, C. N., Mummery, C. J., Schott, J. M., Rossor, M. N., Fox, N. C.,
Crutch, S. J., Rohrer, J. D., & Warren, J. D. (2018). Primary progressive
aphasia: A clinical approach. Journal of Neurology, 265(6), 1474–1490.
https://doi.org/10.1007/s00415-018-8762-6
McIntyre, A., Harding, E., Yong, K. X., Sullivan, M. P., Gilhooly, M., Gilhooly, K.,
Woodbridge, R., & Crutch, S. (2019). Health and social care practitioners’ understanding
of the problems of people with dementia-related visual processing
impairment. Health & Social Care in the Community, 27(4), 982–990.
Millenaar, J. K., Bakker, C., Koopmans, R. T., Verhey, F. R., Kurz, A., & de Vugt,
M. E. (2016). The care needs and experiences with the use of services of
people with young-onset dementia and their caregivers: A systematic
review. International Journal of Geriatric Psychiatry, 31(12), 1261–1276.
https://doi.org/10.1002/gps.4502
Morse, J. M., Barrett, M., Mayan, M., Olson, K., & Spiers, J. (2002). Verification
strategies for establishing reliability and validity in qualitative research.
International Journal of Qualitative Methods, 1(2), 13–22. https://doi.
org/10.1177/160940690200100202
Núñez-Naveira, L., Alonso-Búa, B., de Labra, C., Gregersen, R., Maibom, K.,
Mojs, E., Krawczyk-Wasielewska, A., & Millán-Calenti, J. C. (2016).
UnderstAID, an ICT platform to help informal caregivers of people with
dementia: A pilot randomized controlled study. BioMed Research
International, 2016, 1–13. https://doi.org/10.1155/2016/5726465
Piguet, O., Hornberger, M., Mioshi, E., & Hodges, J. R. (2011). Behaviouralvariant
frontotemporal dementia: Diagnosis, clinical staging, and management.
The Lancet Neurology, 10(2), 162–172. https://doi.org/10.1016/
S1474-4422(10)70299-4
Prince, M. J., Wimo, A., Guerchet, M. M., Ali, G. C., Wu, Y.-T., & Prina, M. (2015).
World Alzheimer report 2015-the global impact of dementia: An analysis
of prevalence, incidence, costs and trends, pp. 1–79.
QSR International. (2018). NVivo Version 12 [Computer Software].
Ratnavalli, E., Brayne, C., Dawson, K., & Hodges, J. R. (2002). The prevalence
of frontotemporal dementia. Neurology, 58(11), 1615–1621. https://doi.
org/10.1212/wnl.58.11.1615
Roach, P., Drummond, N., & Keady, J. (2016). ‘Nobody would say that it is
Alzheimer’s or dementia at this age’: Family adjustment following a agnosis of early-onset dementia. Journal of Aging Studies, 36, 26–32.
https://doi.org/10.1016/j.jaging.2015.12.001
Ryan, N. S., Nicholas, J. M., Weston, P. S. J., Liang, Y., Lashley, T., Guerreiro, R.,
Adamson, G., Kenny, J., Beck, J., Chavez-Gutierrez, L., de Strooper, B.,
Revesz, T., Holton, J., Mead, S., Rossor, M. N., & Fox, N. C. (2016). Clinical
phenotype and genetic associations in autosomal dominant familial
Alzheimer’s disease: A case series. The Lancet Neurology, 15(13), 1326–
1335. https://doi.org/10.1016/S1474-4422(16)30193-4
Shalaby, R. A. H., & Agyapong, V. I. (2020). Peer support in mental health: Literature
review. JMIR Mental Health, 7(6), e15572. https://doi.org/10.2196/15572
Smith, R., Drennan, V., Mackenzie, A., & Greenwood, N. (2018). Volunteer
peer support and befriending for carers of people living with dementia:
An exploration of volunteers’ experiences. Health & Social Care in the
Community, 26(2), 158–166. https://doi.org/10.1111/hsc.12477
Snowden, J. S., Stopford, C. L., Julien, C. L., Thompson, J. C., Davidson, Y., Gibbons,
L., Pritchard, A., Lendon, C. L., Richardson, A. M., Varma, A., Neary, D., & Mann,
D. M. (2007). Cognitive phenotypes in Alzheimer’s disease and genetic risk.
Cortex, 43(7), 835–845. https://doi.org/10.1016/S0010-9452(08)70683-X
Solomon, P. (2004). Peer support/peer provided services underlying processes,
benefits, and critical ingredients. Psychiatric Rehabilitation
Journal, 27(4), 392–401. https://doi.org/10.2975/27.2004.392.401
Suhr, J. A., Cutrona, C. E., Krebs, K. K., & Jensen, S. L. (2004). The social support
behavior code (SSBC). In P. K. Kerig & D. H. Baucom (Eds.), Couple
Observational Coding Systems, (pp. 311–318). Routledge.
Sullivan, M. P., Williams, V., Grillo, A., McKee-Jackson, R., Camic, P. M., Windle,
G., Stott, J., Brotherhood, E., & Crutch, S. J, team, R. D. S. r. (2022). Peer
support for people living with rare or young onset dementia: An integrative
review. Dementia, 21(8), 2700–2726. 14713012221126368.
https://doi.org/10.1177/14713012221126368
Svanberg, E., Stott, J., & Spector, A. (2010). ‘ Just Helping’: Children living
with a parent with young onset dementia. Aging & Mental Health, 14(6),
740–751. https://doi.org/10.1080/13607861003713174
Tookey, S. A., Greaves, C. V., Rohrer, J. D., & Stott, J. (2021). Specific support
needs and experiences of carers of people with frontotemporal dementia:
A systematic review. Dementia, 20(8), 3032–3054. https://doi.
org/10.1177/14713012211022982
Walker, C., & Peterson, C. L. (2021). Where does value lie in peer support?
An exploratory discussion of the theories and methods underpinning
effective research in peer support. Qualitative Health Research, 31(2),
218–227. https://doi.org/10.1177/1049732320964173
WHO (2020). Dementia. https://www.who.int/news-room/fact-sheets/
detail/dementia