Families living with younger onset dementia face unique social challenges, which services do not currently address. There is a gap in understanding the experiences of families affected by younger onset dementia, including the interactions and relationships within the family units, and with existing services and supports. In this qualitative research study, semi-structured interviews were conducted across Australia with seven health and social care providers, five persons living with younger onset dementia, six spouse/carers, and 17 children. A thematic analysis was conducted using a theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model. Two central themes emerged in the data: (1) Understanding the social demands on the family – lifecycle challenges living with younger onset dementia from a social and family context; and (2) Interactions of health and social care providers with families living with younger onset dementia – opportunities and challenges in providing support and services geared to a whole family approach. In order to provide families for those living with younger onset dementia with optimal assistance and support, co-creation of a family-focused services model is proposed. Its purpose is to support effective therapeutic interactions and service development among service users, service providers, and stakeholders.
BarcaM.ThorsenK.EngedalK.HauganP.JohannessenA. (2014). Nobody asked me how I felt: Experiences of adult children of persons with younger onset dementia. International Psychogeriatrics, 26(12), 1935–1944. DOI: 10.1017/S1041610213002639.
BateP.RobertG. (2006).
Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality and Safety in Health Care,
15(5), 307–310. DOI: 10.1136/qshc.2005.016527.
4.
BeattieA.Daker-WhiteG.GilliardJ.MeansR. (2002).
Younger people in dementia care: A review of service needs, service provision and models of good practice. Aging & Mental Health,
6(3), 205–212.
5.
BrodatyH.DonkinM. (2009).
Family caregivers of people with dementia. Dialogues in Clinical Science,
11(2), 217–228.
6.
CarterJ. E.OyebodeJ. R.KoopmansR. T. C. M. (2017).
Young-onset dementia and the need for specialist care: A national and international perspective. Aging & Mental Health,
1, 6. DOI: 10.1080/13607863.2016.1257563.
7.
CationsM.WithallA.HorsfallR.DenhamN.WhiteF.TrollorJ.DraperB. (2017).
Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PLoS ONE,
12(7), 1–15. DOI: doi.org/10.1371/journal.pone.0180935.
8.
ChappellA.GoodleyD.LawthomR. (2001).
Making connections: The relevance of the social model of disability for people with learning difficulties. British Journal of Learning Disabilities,
29, 45–50.
9.
ClareL.CoxS. (2003).
Improving service approaches and outcomes for people with complex needs through consultation and involvement.Disability & Society,
18(7), 935–953. DOI: 10.10180/0968759032000127344.
10.
ClarkeH.HughesN. (2010).
Introduction: Family minded policy and whole family practice – Developing a critical research framework. Social Policy and Society,
9(4), 527–531.
11.
EdvardssonB.TronvollB.GruberT. (2011).
Expanding understanding of service exchange and value co-creation: A social construction approach. Journal of the Academy of Marketing Science,
39(2), 327–339. DOI: 10.1007/s11747-010-0200-y.
12.
EdwardsR.VossS.IliffeS. (2014).
Education about dementia in primary care: Is person-centredness the key?.Dementia,
13(1), 111–119.
13.
Evans-RobertsC.WeatherheadS.VaughanF. (2013).
Working with families following brain injury. Revista chilena de neuropsicología,
8(2), 1–9.
FontanaA.FreyJ. (2005). The interview. In N. DenzinY. Lincoln (Eds), Qualitative research (3rd ed., pp. 695–728). Thousand Oaks, CA
: SAGE.
16.
FreireK.SangiorgiD. (2010). Service design and healthcare innovation: From consumption to coproduction and co-creation. Paper presented at the Second Nordic Conference on Service Design and Service Innovation.
17.
GaleN.HeathG.CameronE.RashidS.RedwoodS. (2013).
Using the framework method for analysis of qualitative data in multi-disciplinary research. BMC Medical Research Methodology,
13, 117.
18.
GelmanC.GreerC. (2011).
Young children in early onset Alzheimer's disease families: Research gaps and emerging service needs. American Journal of Alzheimers Disease and Other Dementias,
26(1), 29–35.
19.
GilliardJ.MeansR.BeattieA.Daker-WhiteG. (2005).
Dementia care in England and the social model of disability: Lessons and issues. Dementia,
4(4), 571–586. DOI: 10.1177/1471301205058312.
20.
GreenwoodN.SmithR. (2016).
The experiences of people with younger-onset dementia: A meta-ethnographic review of the qualitative literature.Maturitas,
92, 102–109.
21.
HutchinsonK.RobertsC.DalyM.BulsaraC.KurrleS. (2016).
Empowerment of young people who have a parent living with dementia: A social model perspective. International Psychogeriatrics,
28(4), 657–668. DOI: 10.1017/S1041610215001714.
22.
HutchinsonK.RobertsC.KurrleS.DalyM. (2016).
The emotional wellbeing of young people having a parent with younger onset dementia. Dementia,
15(4), 609–628. DOI: 10.1177/1471301214532111.
23.
IrwinL.JohnsonJ. (2005).
Interviewing young children: Explicating our practices and dilemmas. Qualitavie Health Research,
15(6), 821–831.
24.
KeadyJ.NolanM. (2003). The dynamics of dementia: Working together, working separately or working alone?. In NolanM.LundhU.GrantG.KeadyJ. (Eds), Partnerships in family care; Understanding the caregiving career (pp. 15–32).
Buckingham, UK:
Open University Press.
25.
La FontaineJ.OyebodeJ. (2014).
Family relationships and dementia: A synthesis of qualitative research including the person with dementia.Ageing & Society,
34, 1243–1272.
26.
LuscombeG.BrodatyH.FreethS. (1998).
Younger people with dementia: Diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry,
13, 323–330.
27.
McDonaldF.PattersonP.WhiteK.ButowP.CostaD.KerridgeI. (2016).
Correlates of unmet needs and psychological distress in adolescents and young adults who have a parent diagnosed with cancer. Psycho-Oncology,
25, 447–454.
28.
MayrhoferA.MathieE.McKeownJ.BunnF.GoodmanC. (2017).
Age-appropriate services for people diagnosed with young onset dementia (YOD): A systematic review. Aging & Mental Health, 1–9. DOI: 10.1080/13607863.2017.1334038.
29.
Mental Health Foundation. (2015). Dementia, rights, and the social model of disability. Policy discussion paper. London.
30.
MillenaarJ.BakkerC.KoopmansR.VerheyF.KurzA., D.VugtM. (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. DOI: 101002/gps.4502
31.
MillenaarJ. K.BakkerC.van VlietD.KoopmansR. T. C. M.KurzA.VerheyF. R. J.de VugtM. E. (2017).
Exploring perspectives of young onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry, 33(2), 340–347. DOI: 10.1002/gps.4749.
32.
MurphyK.JordanF.HunterA.CooneyA.CaseyD. (2015).
Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia,
14(6), 800–824.
33.
MurrayL.BarnesM. (2010).
Have families been rethought? Ethic of care, family and ‘whole family’ approaches. Social Policy and Society,
9(04), 533–544. DOI: 10.1017/S1474746410000254.
34.
NolanM.RyanT.EnderbyP.ReidD. (2002).
Towards a more inclusive vision of dementia care practice and research. Dementia,
1(2), 193–211.
35.
OliverM. (1983). Social work with disabled people (1st ed.).
Basingstoke, UK:
Palgrave Macmillan.
36.
OliverM. (2009). Understanding disability from theory to practice (2nd ed.). Basingstoke,
UK:
Palgrave Macmillan.
37.
OliverM. (2013).
The social model of disability: Thirty years on. Disability and Society,
28(7), 1024–1026.
38.
PattersonK.ClarkeC.WolverstonE.Moniz-CookE. (2017).
Through the eyes of others – The social experiences of people with dementia: A systematic literature review and synthesis. International Psychogeriatrics, 1–15. DOI: 10.1017/S1041610216002374.
39.
PaulyB.VarcoeC.StorchJ. (2012).
Framing the issues: Moral distress in healthcare. Healthcare Ethics Committee Forum,
24, 1–11.
40.
PrattR.ClareL.KirchnerV. (2006).
'It's like a revolving door syndrome': Professional perspectives on models of access to services for people with early stage dementia. Aging and Mental Health,
10(1), 55–62. DOI: 10.1080/13607860500307530.
41.
RitchieJ.LewisJ.NichollsC.OrmstonR. (2013). Qualitative research practice: A guide for social science students and researchers (2nd ed.).
London, UK:
Sage.
42.
RoachP. (2010). A family-centred study of younger people with dementia (PhD Thesis). University of Manchester, UK.
43.
RoachP.DrummondN.KeadyJ. (2016).
Nobody would say that it is Alzheimer's or dementia at this age: Family adjustment following a diagnosis of early-onset dementia.Journal of Aging Studies,
36, 26–32.
44.
RoachP.KeadyJ.BeeP.WilliamsS. (2014).
We can't keep going on like this’: Identifying family storylines in young onset dementia. Ageing & Society,
34(08), 1397–1426. DOI: 10.1017/S0144686X13000202.
45.
RobinsonA.EmdenC.LeaE.ElderJ.TurnerP.VickersJ. (2009).
Information issues for providers of services to people with dementia living in the community in Australia: Breaking the cycle of frustration. Health and Social Care in the Community,
17(2), 141–150.
46.
RobinsonM.CottrellD. (2005).
Health professionals in multi-disciplinary and multi-agency teams: Changing professional practice. Journal of Interprofessional Care,
19(6), 547–560. DOI: 10.1080/13561820500396960.
47.
RollandJ. (1987).
Chronic illness and the life cycle: A conceptual framework. Family Process,
26(2), 203–221. DOI: 10.1111/j.1545-5300.1987.00203.x.
48.
RollandJ. (1990).
Anticipatory loss: A family systems developmental framework. Family Process,
29(3), 229–244. DOI: 10.1111/j.1545-5300.1990.00229.x.
49.
RollandJ. (1999).
Parental illness and disability: Family systems framework. Journal of Family Therapy,
21, 242–266.
50.
RollandJ. (2005).
Cancer and the family: An integrative model. Cancer,
104(S11), 2584–2595. DOI: 10.1002/cncr.21489.
RushtonC. (2016).
Moral resilience: A capacity for navigating moral distress in critical care. Advanced Critical Care,
27, 111–119.
53.
SansoniJ.DuncanC.GrootemaatP.CapellJ.SamsaP.WesteraA. (2016).
Younger onset dementia: A review of the literature to inform service development. American Journal of Alzheimer's Disease and Other Dementias, 31(8), 693–705. DOI: 10.1177/1533317515619481.
54.
ShakespeareT.ZeiligH.MittlerP. (2017). Rights in mind: Thinking differently about dementia and disability. Dementia. 18(3), 1075–1088.
55.
SurrC.SmithS.CrosslandJ.RobinsJ. (2016).
Impact of a person centred dementia care training programme on hospital staff attitudes, role efficacy and perceptions caring for people with dementia: A repeated measures study. International Journal of Nursing Studies,
53, 144–151.
56.
SvanbergE.SpectorA.StottJ. (2011).
The impact of young onset dementia on the family: A literature review. International Psychogeriatrics,
23(3), 358–371.
57.
ThomasC.MilliganC. (2018).
Dementia, disability rights and disablism: Understanding the social position of people living with dementia. Disability andSociety,
33(1), 115–131. DOI: 10.1080/09687599.2017.1379952.
58.
van VlietD.de VugtM. E.BakkerCKoopmansR. T.VerheyF. R. (2010).
Impact of early onset dementia on caregivers: A review. International Journal of Geriatric Psychiatry,
25, 1091–1100.
59.
van VlietD.de VugtM.BakkerC.KoopmansR.PijnenburgY.Vernooij-DassenM.VerheyF. (2011).
Caregivers' perspectives on the pre-diagnostic period in early onset dementia: A long and winding road. International Psychogeriatrics,
23(9), 1393–1404. DOI: 10.1017/s1041610211001013.
60.
WithallA.DraperB.SeeherK.BrodatyH. (2014).
The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. International Psychogeriatrics,
26(Special Issue 12), 1955–1965. DOI: 10.1017/S1041610214001835.
