Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their carers

Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.

Ainamani HE, Alele PE, Rukundo GZ, Maling S, Wakida EK, Obua C and Tsai AC (2020) Caregiving
burden and mental health problems among family carers of people with dementia in rural Uganda.
Global Mental Health 7, e13.
Alhasan DM, Hirsch JA, Jackson CL, Miller MC, Cai B and Lohman MC (2021) Neighborhood characteristics
and the mental health of carers cohabiting with care recipients diagnosed with Alzheimer’s
disease. International Journal of Environmental Research and Public Health 18, 913–927.
Alzheimer’s Australia (2007) Support Needs of People Living with Dementia in Rural and Remote Australia.
Available at https://www.dementia.org.au/files/20070200_Nat_SUB_SuppNeedsPplLivDe...
Alzheimer’s Disease International (ADI) (2013) Policy Brief for Heads of Government: The Global Impact
of Dementia 2013–2050. Available at https://www.alz.co.uk/research/GlobalImpactDementia2013.pdf.
Alzheimer’s Society (2016) Dementia in Rural Wales: The Three Challenges. Available at https://www.
alzheimers.org.uk/sites/default/files/migrate/downloads/alz_dementia_in_rural_wales.pdf.
Alzheimer’s Society (2017) Dementia in Rural Wales: The Lived Experiences. Available at https://www.
alzheimers.org.uk/sites/default/files/migrate/downloads/dementia_in_rural_wales_the_lived_experiences.pdf.
Arksey H and O’Malley L (2005) Scoping studies: towards a methodological framework. International
Journal of Social Research Methodology 8, 19–32.
Bardach SH, Gibson A, Parsons K, Stauffer A and Jicha GA (2021) Rural caregivers: identification of
informational needs through telemedicine questions. Journal of Rural Health 37, 406–411.
Bauer M, Fetherstonhaugh D, Blackberry I, Farmer J and Wilding C (2019) Identifying support needs to
improve rural dementia services for people with dementia and their carers: a consultation study in
Victoria, Australia. Australian Journal of Rural Health 27, 22–27.Bayly M, Morgan D, Chow AF, Kosteniuk J and Elliot V (2020) Dementia-related education and support
service availability, accessibility and use in rural areas: barriers and solutions. Canadian Journal on Aging
39, 545–585.
Branger C, Burton R, O’Connell ME, Stewart N and Morgan D (2016a) Coping with cognitive impairment
and dementia: rural caregivers’ perspectives. Dementia 15, 814–831.
Branger C, O’Connell ME and Morgan DG (2016b) Factor analysis of the 12-item Zarit Burden Interview
in caregivers of persons diagnosed with dementia. Journal of Applied Gerontology 35, 489–507.
Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3,
77–101.
Burgener SC, Buckwalter K, Perkhounkova Y, Liu MF, Riley R, Einhorn CJ, Fitzsimmons S and
Hahn-Swanson C (2015) Perceived stigma in persons with early-stage dementia: longitudinal findings:
part 1. Dementia 14, 589–608.
Chisholm R and Bischoping K (2019) The narrative self in rural dementia: a case study from eastern Nova
Scotia. Ageing & Society 39, 1436–1458.
Clarke CL and Bailey C (2016) Narrative citizenship, resilience and inclusion with dementia: on the inside
or on the outside of physical and social places. Dementia 15, 434–452.
Cox T, Hoang H, Goldberg LR and Baldock D (2019) Aboriginal community understandings of dementia
and responses to dementia care. Public Health 172, 15–21.
Dal Bello-Haas VPM, Cammer A, Morgan D, Stewart N and Kosteniuk J (2014) Rural and remote
dementia care challenges and needs: perspectives of formal and informal care providers residing in
Saskatchewan, Canada. Rural and Remote Health 14, 1–13.
DesMeules M, Pong R, Lagacé C, Heng D, Manuel D, Pitblado R, Bollman R, Guernsey J, Kazanjian A
and Koren I (2006) How Healthy Are Rural Canadians? An Assessment of Their Health Status and
Health Determinants. Canadian Institute for Health Information. Available at https://secure.cihi.ca/
free_products/rural_canadians_2006_report_e.pdf.
Di Gregorio D, Ferguson S and Wiersma E (2015) From beginning to end: perspectives of the dementia
journey in northern Ontario. Canadian Journal on Aging 34, 100–112.
Disbrow EA, Arnold CL, Glassy N, Tilly CM, Langdon KM, Gungor D and Davis TC (2021) Alzheimer
disease and related dementia resources: perspectives of African American and Caucasian family caregivers
in northwest Louisiana. Journal of Applied Gerontology 40, 209–219.
Dotchin CL, Paddick S, Longdon AR, Kisoli A, Gray WK, Dewhurst F, Dewhurst M and Walker RW
(2014) A comparison of caregiver burden in older persons and persons with Parkinson’s disease or
dementia in sub-Saharan Africa. International Psychogeriatrics 26, 687–692.
Ehrlich K, Boström A, Mazaheri M, Heikkilä K and Emami A (2015) Family caregivers’ assessments of
caring for a relative with dementia: a comparison of urban and rural areas. International Journal of Older
People Nursing 10, 27–37.
Ehrlich K, Emami A and Heikkilä K (2017) The relationship between geographical and social space and
approaches to care among rural and urban caregivers caring for a family member with dementia: a qualitative
study. International Journal of Qualitative Studies on Health and Well-being 12, 1–11.
Ervin K and Reid C (2015) Service utilisation by carers of people with dementia in rural Victoria.
Australasian Journal on Ageing 34, E1–E6.
Ervin K, Pallant J and Reid C (2015) Caregiver distress in dementia in rural Victoria. Australasian Journal
on Ageing 34, 235–240.
Forbes D, Ward-Griffin C, Kloseck M, Mendelsohn M, St-Amant O, DeForge R and Clark K (2011)
‘Her world gets smaller and smaller with nothing to look forward to’: dimensions of social inclusion
and exclusion among rural dementia care networks. Online Journal of Rural Nursing and Health Care
11, 27–42.
Forbes DA, Finkelstein S, Blake CM, Gibson M, Morgan DG, Markle-Reid M, Culum I and Thiessen E
(2012) Knowledge exchange throughout the dementia care journey by Canadian rural community-based
health care practitioners, persons with dementia and their care partners: an interpretive descriptive
study. Rural and Remote Health 12, 1–15.
Forbes D, Blake C, Thiessen E, Finkelstein S, Gibson M, Morgan DG, Markle-Reid M and Culum I
(2013) Dementia care knowledge sharing within a First Nations community. Canadian Journal on
Aging 32, 360–374.Forbes DA, Blake C, Bayly M, Peacock S, Hawranik P and Innes A (2018) Integrated knowledge translation
strategies that enhance the lives of persons with dementia and their family caregivers. Online
Journal of Rural Nursing and Health Care 18, 209–238.
Gan DR, Chaudhury H, Mann J and Wister AV (2022) Dementia-friendly neighborhood and the built
environment: a scoping review. The Gerontologist 62, e340–e356.
Gibson A, Holmes SD, Fields NL and Richardson VE (2019) Providing care for persons with dementia in
rural communities: informal caregivers’ perceptions of supports and services. Journal of Gerontological
Social Work 62, 630–648.
Gilmour H (2004) Living alone with dementia: risk and the professional role. Nursing Older People 16, 20–24.
Heggie M, Morgan D, Crossley M, Kirk A, Wong P, Karunanayake C and Beever R (2012) Quality of life
in early dementia: comparison of rural patient and caregivers ratings at baseline and one year. Dementia
11, 521–541.
Herron RV and Rosenberg MW (2017) ‘Not there yet’: examining community support from the perspective
of people with dementia and their partners in care. Social Science & Medicine 173, 81–87.
Herron RV and Rosenberg MW (2019) Dementia in rural settings: examining the experiences of former
partners in care. Ageing & Society 39, 340–357.
Herron RV, Rosenberg MW and Skinner MW (2016) The dynamics of voluntarism in rural dementia
care. Health & Place 41, 34–41.
Hicks B, Innes A and Nyman SR (2021) Experiences of rural life among community-dwelling older men
with dementia and their implications for social inclusion. Dementia 20, 444–463.
Innes A, Sherlock K and Cox S (2003) Seeking the views of people with dementia on services in rural
areas. Journal of Dementia Care 11, 37–38.
Innes A, Morgan D and Kostineuk J (2011) Dementia care in rural and remote settings: a systematic
review of informal/family caregiving. Maturitas 68, 34–46.
Innes A, Szymczynska P and Stark C (2014) Dementia diagnosis and post-diagnostic support in
Scottish rural communities: experiences of people with dementia and their families. Dementia 13,
233–247.
Jia J, Wang F, Wei C, Zhou A, Jia X, Li F, Tang M, Chu L, Zhou Y, Zhou C and Cui Y (2014) The
prevalence of dementia in urban and rural areas of China. Alzheimer’s and Dementia 10, 1–9.
Kaufman AV, Kosberg JI, Leeper JD and Tang M (2010) Social support, caregiver burden and life satisfaction
in a sample of rural African American and white caregivers of older persons with dementia.
Journal of Gerontological Social Work 53, 251–269.
Kelly C and Yarwood R (2018) From rural citizenship to the rural citizen: farming, dementia and networks
of care. Journal of Rural Studies 63, 96–104.
Krutter S, Schaffler-Schaden D, Essl-Maurer R, Wurm L, Seymer A, Kriechmayr C, Mann E,
Osterbrink J and Flamm M (2020) Comparing perspectives of family caregivers and healthcare professionals
regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting.
Age and Ageing 49, 199–207.
Krutter S, Schaffler-Schaden D, Eßl-Maurer R, Seymer A, Osterbrink J and Flamm M (2022) Home care
nursing for persons with dementia from a family caregivers’ point of view: predictors of utilisation in a
rural setting in Austria. Health and Social Care in the Community 30, 389–399.
Levac D, Colquhoun H and O’Brien KK (2010) Scoping studies: advancing the methodology.
Implementation Science 5, 1–9.
Li H, Kyrouac GA, McManus DQ, Cranston RE and Hughes S (2012) Unmet home care service needs of
rural older adults with Alzheimer’s disease: a perspective of informal caregivers. Journal of Gerontological
Social Work 55, 409–425.
Li X, Keady J and Ward R (2021) Transforming lived places into the connected neighbourhood: a longitudinal
narrative study of five couples where one partner has an early diagnosis of dementia. Ageing &
Society 41, 605–627.
Mattos MK, Nilsen ML and Lingler JH (2018) Experiences surrounding an early-stage cognitive diagnosis
in rural-dwelling older adults. Research in Gerontological Nursing 11, 181–189.
Ministerial Advisory Council on Rural Health (2002) Rural Health in Rural Hands: Strategic Directions
for Rural, Remote, Northern and Aboriginal Communities. Available at https://publications.gc.ca/
collections/Collection/H39-657-2002E.pdf.Morgan DG, Walls-Ingram S, Cammer A, O’Connell ME, Crossley M, Bello-Haas VD, Forbes D, Innes
A, Kirk A and Stewart N (2014) Informal caregivers’ hopes and expectations of a referral to a memory
clinic. Social Science & Medicine 102, 111–118.
Müller B, Kropp P, Cardona MI, Michalowsky B, van den Berg N, Teipel S, Hoffmann W and Thyrian
JR (2021) Types of leisure time physical activities (LTPA) of community-dwelling persons who have
been screened positive for dementia. BMC Geriatrics 21, 270.
Murphy K, Jordan F, Hunter A, Cooney A and Casey D (2015) Articulating the strategies for maximising
the inclusion of people with dementia in qualitative research studies. Dementia 14, 800–824.
Nankinga PN, Maling S, Chemali Z, Wakida EK, Obua C and Okello ES (2020) Informal support for
people with Alzheimer’s disease and related dementias in rural Uganda: a qualitative study.
International Journal of Mental Health Systems 14, 1–11.
O’Connell ME, Germaine N, Burton R, Stewart N and Morgan DG (2013) Degree of rurality is not
related to dementia caregiver distress, burden and coping in a predominantly rural sample. Journal of
Applied Gerontology 32, 1015–1029.
Oldfield M (2021) ‘Nothing about us without us’: involving people with dementia in qualitative research.
Review of Disability Studies: An International Journal 17(2), 1–11.
Orpin P, Stirling C, Hetherington S and Robinson A (2014) Rural dementia carers: formal and informal
sources of support. Ageing & Society 34, 185–208.
Palmer B, Appleby J and Spencer J (2019) Rural Health Care: A Rapid Review of the Impact of Rurality on
the Costs of Delivering Health Care. London: National Centre for Rural Health and Care. Available at
https://www.nuffieldtrust.org.uk/research/rural-health-care.
Prorok JC, Hussain M, Horgan S and Seitz DP (2017) ‘I shouldn’t have had to push and fight’: health care
experiences of persons with dementia and their caregivers in primary care. Aging & Mental Health 21,
797–804.
Public Health Agency of Canada (2019) A Dementia Strategy for Canada: Together We Aspire. Available at
https://www.canada.ca/en/public-health/services/publications/disease...
Russ TC, Batty GD, Hearnshaw GF, Fenton C and Starr JM (2012) Geographical variation in dementia:
systematic review with meta-analysis. International Journal of Epidemiology 41, 1012–1032.
Ryman FV, Erisman JC, Darvey LM, Osborne J, Swartsenburg E and Syurina EV (2019) Health effects of
the relocation of patients with dementia: a scoping review to inform medical and policy decisionmaking.
The Gerontologist 59, 674–682.
Saunders P (2013) Get Your Voice Heard: Living with Dementia in Country SA Report. Alzheimer’s
Australia SA. Available at https://www.dementia.org.au/sites/default/files/Get_Your_Voice_Heard...
Living_With_Dementia_in_Country_SA_Report.pdf.
Saunders MM and Groh CJ (2020) Spousal dementia caregiving to widowhood: perceptions of older urban
and rural widows. Western Journal of Nursing Research 42, 603–611.
Shannon K, Bail K and Neville S (2019) Dementia-friendly community initiatives: an integrative review.
Journal of Clinical Nursing 28, 2035–2045.
Smith K, Flicker L, Shadforth G, Carroll E, Ralph N, Atkinson D, Lindeman MA, Schaper F,
Lautenschlager NT and LoGiudice D (2011) ‘Gotta be sit down and worked out together’: views of
Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal
Australians. Rural and Remote Health 11, 1650–1664.
Stewart NJ, Morgan DG, Karunanayake CP, Wickenhauser JP, Cammer A, Minish D, O’Connell ME
and Hayduk LA (2016) Rural caregivers for a family member with dementia: models of burden and distress
differ for women and men. Journal of Applied Gerontology 35, 150–178.
Sun F, Kosberg JI, Kaufman AV and Leeper JD (2010a) Coping strategies and caregiving outcomes
among rural dementia caregivers. Journal of Gerontological Social Work 53, 547–567.
Sun F, Kosberg JI, Leeper J, Kaufman AV and Burgio L (2010b) Racial differences in perceived burden of
rural dementia caregivers: the mediating effect of religiosity. Journal of Applied Gerontology 29, 290–307.
Szymczynska P, Innes A, Mason A and Stark C (2011) A review of diagnostic process and postdiagnostic support
for people with dementia in rural areas. Journal of Primary Care and Community Health 2, 262–276.
Thomson S, Figueras J, Evetovits T, Jowett M, Mladovsky P, Maresso A, Cylus J, Karanikolos M and
Kluge H (2015) Economic Crisis, Health Systems and Health in Europe: Impact and Implications for
Policy. Maidenhead, UK: McGraw-Hill Education.Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, Moher D, Peters MD, Horsley T,
Weeks L, Hempel S, Akl EA, Chang C, McGowan J, Stewart L, Hartling L, Aldcroft A, Wilson
MG, Garritty C, Lewin S, Godfrey CM, Macdonald MT, Langlois EV, Soares-Weiser K, Moriaty J,
Clifford T, Tuncalp Ö and Straus S (2018) PRISMA extension for scoping reviews (PRISMA-ScR):
checklist and explanation. Annals of Internal Medicine 169, 467–473.
Vellone E, Piras G, Venturini G, Alvaro R and Cohen MZ (2012) Quality of life for caregivers of people
with Alzheimer’s disease living in Sardinia, Italy. Journal of Transcultural Nursing 23, 46–55.
von Kutzleben M, Reuther S, Dortmann O and Holle B (2016) Care arrangements for
community-dwelling people with dementia in Germany as perceived by informal carers – a cross-sectional
pilot survey in a provincial-rural setting. Health and Social Care in the Community 24, 283–296.
Walsh S, Pertl M, Gillespie P, Lawlor B, Brennan S and O’Shea E (2021) Factors influencing the cost of
care and admission to long-term care for people with dementia in Ireland. Aging & Mental Health 25,
512–520.
Webb J, Williams V, Gall M and Dowling S (2020) Misfitting the research process: shaping qualitative
research ‘in the field’ to fit people living with dementia. International Journal of Qualitative Methods
19, 1–11.
Weden MM, Shih RA, Kabeto MU and Langa KM (2018) Secular trends in dementia and cognitive
impairment of US rural and urban older adults. American Journal of Preventive Medicine 54, 164–172.
Welsh Government (2018) Dementia Action Plan for Wales 2018–2022. Available at https://gov.wales/sites/
default/files/publications/2019-04/dementia-action-plan-for-wales.pdf.
Werntz AJ, Dodson CS, Schiller AJ, Middlebrooks CD and Phipps E (2015) Mental health in rural caregivers
of persons with dementia. SAGE Open 5, 1–9.
Wiersma EC and Denton A (2016) From social network to safety net: dementia-friendly communities in
rural northern Ontario. Dementia 15, 51–68.
World Health Organization (WHO) (2015)World Report on Ageing and Health. Geneva: WHO. Available
at http://apps.who.int/iris/bitstream/10665/186463/1/9789240694811-eng....
World Health Organization (WHO) (2017) Global Action Plan on the Public Health Response to Dementia
2017–2025. Geneva: WHO. Available at https://www.who.int/mental_health/neurology/dementia/
action_plan_2017_2025/en/.
World Health Organization (WHO) (2021) Global Status Report on the Public Health Response to
Dementia. Geneva: WHO. Available at https://www.who.int/publications/i/item/9789240033245.
World Health Organization (WHO) and Alzheimer’s Disease International (ADI) (2012) Dementia: A
Public Health Priority. Available at https://www.who.int/mental_health/publications/dementia_
report_2012/en/.
Wu Y, Clare L, Jones IR, Martyr A, Nelis SM, Quinn C, Victor CR, Lamont RA, Rippon I and
Matthews FE and Improving the Experience of Dementia and Enhancing Active Life (IDEAL)
Study (2018) Inequalities in living well with dementia – the impact of deprivation on well-being, quality
of life and life satisfaction: results from the Improving the Experience of Dementia and Enhancing Active
Life Study. International Journal of Geriatric Psychiatry 33, 1736–1742.
Xie B, Champion JD, Kwak J and Fleischmann KR (2018) Mobile health, information preferences and
surrogate decision-making preferences of family caregivers of people with dementia in rural Hispanic
communities: cross-sectional questionnaire study. Journal of Medical Internet Research 20, e11682.
Yahalom J (2019) Pragmatic truths about illness experience: idioms of distress around Alzheimer’s disease
in Oaxaca, Mexico. Transcultural Psychiatry 56, 599–619.
Yang F, Ran M and LuoW(2019) Depression of persons with dementia and family caregiver burden: finding
positives in caregiving as a moderator. Geriatrics and Gerontology International 19, 414–418.