It is widely reported that carers who provide care for a family member with dementia endure physical and psychological burdens. Not only do they fulfil an important role for the person with dementia but also for the wider society. This study aims to explore the experiences of carers who provide end-of-life care for a person with late-stage dementia at home.
Method
Semi-structured interviews were conducted with 17 current carers and 6 past carers of a family member with late-stage dementia. Data was analysed using interpretative phenomenological analysis.
Results
Four super-ordinate themes were identified which described the challenges faced by carers at different stages of their care giving journey: (1) The experience of dementia grief; (2) Parenting the parent; (3) Seeking support; (4) Death, dying and life after death.
Conclusion
Dementia grief was experienced by carers as a result of a relationship change and an inability to recognise the person with dementia as their mother, father or spouse. A role transition ensued resulting in the carer adopting the role of parent. Carers expressed a desire to provide care for the person with dementia at home until the time of death; however, support is required in this area at both individual and community level. Family carers require education to help identify the dying phase which will assist to minimise the shock of death. Strong evidence suggests that the burden of care may leave family carers poorly equipped to adapt to life after the death of the person with dementia. Greater pre-death support is required to facilitate a better post bereavement adjustment.
Addington-HallJ. M.HigginsonI. J. (2001). Palliative care for non-cancer patients.
Oxford, UK:
Oxford University Press.
2.
AdelmanR. D.LyubovL.TmanovaD. V. M.DelgadoD.DionS.LachsM. (2014).
Caregiver burden. A clinical review. JAMA,
311, 1052–1059. DOI:10.1001/jama.2014.304.
3.
AneshenselC.PearlinL.MullanJ.ZaritS.WhitlatchC. (1995). Profiles in caregiving, the unexpected career.
San Diego:
Academic Press.
4.
ArcandM. (2015).
End-of-life issues in advanced. Dementia. Part 1: Goals of care, decision-making process & family education. Canadian Family Physician,
61, 330–334.
5.
BarberJ.MurphyK. (2011).
Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia. International Journal of Palliative Nursing,
17, 587–591.
6.
BlandinK.PepinR. (2017).
Dementia grief: A theoretical model of a unique grief experience. Dementia,
16, 67–78.
7.
BorgstromE. (2016).
Social death. QJM: An International Journal of Medicine,
110, 5–7.
8.
CahillS.O’SheaE.PierceM. (2012). Creating excellence in dementia care: A research review for Ireland’s national dementia strategy.
Dublin, Ireland:
Dementia Services Information and Development Centre.
9.
ChanG. K. (2004).
End of life models and emergency department care. Academic Emergency Medicine,
11, 79–86. DOI: 10.1197/j.aem.2003.07.019.
10.
ChanD.LivingstonG.JonesL.SampsonE. L. (2013).
Grief reactions in dementia carers: A systematic review. International Journal of Geriatric Psychiatry,
28, 1–17.
11.
ChiaoC. Y.WuH. S.HsiaoC. Y. (2015).
Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review,
62, 340–350.
12.
Central Statistics Office (2016a). Census of population – Chapter 1: Population change and historical perspectives.
Dublin, Ireland:
Stationary Office.
13.
Central Statistics Office (2016b). Census of population – Chapter 4: Household and families.
Dublin, Ireland:
Stationary Office.
14.
CoelhoA.BarbosaA. (2017).
Family anticipatory grief: An integrative literature review. American Journal of Hospice & Palliative Medicine,
34, 774–785.
15.
de BoerM. E.DroesR. M.JonkerC.EefstingJ. A.HertoghC. (2011).
Advanced directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experiences of physicians and relatives. Journal of the American Geriatrics Society,
59, 989–996.
16.
EarleS.KomaromyC.BartholomewC. (2009). Death and dying: A reader.
London, UK:
SAGE.
GastmansC.de LepeleireJ. (2010).
Living to the bitter end? A personalist approach to euthanasia in persons with severe dementia. Bioethics,
24, 78–86.
19.
HebertR. S.DangQ.SchulzR. (2006).
Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: Findings from the REACH study. Journal of Palliative Medicine,
9, 683–693.
20.
HenningsJ.FroggattK.KeadyJ. (2010).
Approaching the end of life and dying in care homes: The accounts of family carers. Reviews in Clinical Gerontology,
20, 114–127.
21.
HerrK.CoyneP. J.KeyT., et al. (2006).
Persons with advanced dementia: Guiding principles for the assessment of pain. Pain Management in Nursing,
7, 44–52.
22.
HertoughC. M. P. M. (2006).
Advance care planning and the relevance of a palliative care approach in dementia. Age and Ageing,
35, 553–555.
23.
HollandJ. M.NeimeyerR. A.BoelenP. A.PrigersonH. (2009).
The underlying structure of grief: A taxometric investigation of prolonged and normal reactions to loss. Journal of Psychopathology & Behavioural Assessment,
31, 190–201.
24.
HuseboB. S.StrandL. I.Moe-NilssenR.BorgeHuseboS.AarslandD.LjunggrenA. E. (2008).
Who suffers most? Dementia and pain in nursing home patients: A cross sectional study. Journal of the American Medical Directors Association,
9, 427–433.
25.
KawulichB. (2011).
Gatekeeping: An ongoing adventure in research. Field Methods,
23, 57–76.
26.
LargeS.SlingerR. (2013).
Grief in caregivers of persons with Alzheimer’s disease and related dementia: A qualitative synthesis. Dementia,
14, 164–183. DOI: 10.1177/1471301213494511
27.
LarkinM. (2009).
Life after caring: The post caring experiences of former carers. British Journal of Social Work, 39, 1026–1042.
28.
LindauerA.HarvathT. A. (2014).
Pre-death grief in the context of dementia caregiving: A concept analysis. Journal of Advanced Nursing, 70, 2196–2207. DOI: 10.1111/jan.12411
29.
LindgrenC. L. (1993).
The caregiver career. Journal of Nursing Scholarship,
25, 214–219.
30.
MarshG. W.ProchodaK. P.PritchettE.VojirC. P. (2000).
Predicting hospice appropriateness for patients with dementia of the Alzheimer's type. Applied Nursing Research,
13, 187–196.
31.
MartinJ.WilliamsJ.HadjistavropoulosT.HadjistavropoulosH. D.MacLeanM. (2005).
A qualitative investigation of seniors' and caregivers' views on pain assessment and management. The Canadian Journal of Nursing Research,
37, 142–164.
32.
OrgetaV.Lo SterzoE.OrrellM. (2013).
Assessing mental well-being in family carers of people with dementia using the Warwick – Edinburgh Mental Well–Being Scale. International Psychogeriatrics,
25, 1443–1451. DOI: 10.1017/S1041610213000835.
33.
O’RourkeN.TuokkoH. A. (2004).
Caregiver burden and depressive symptomatology: The association between constructs over time. Clinical Gerontologist,
27, 41–51. DOI: 10.1300/J018v27n04_05.
34.
O’SheaO. E.MonaghanC. (2016). An economic analysis of a community-based model for dementia care in Ireland: A balance of care approach.
Mullingar, Ireland:
Genio Ltd.
35.
O’SheaE.CahillS.PierceM. (2017). Developing and implementing dementia policy in Ireland.
NUI Galway:
Centre for Economic and Social Research on Dementia.
36.
PapastavrouE.KalokerinouA.PapacostasS. S.TsangariH.SourtziP. (2007).
Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing,
585, 446–457. DOI: 10.1111/j.1365-2648.2007.04250x
37.
RaymondA.WarnerA.DaviesN.IliffeS.ManthorpeJ. (2014).
Palliative care services for people with dementia: A synthesis of the literature reporting the views and experiences of professionals and family carers. Dementia,
13, 96–110. DOI: 10.1177/1471301212450538
38.
ReilyG. A.EvansL.OyebodeJ. R. (2018).
Relationship continuity and emotional well-being in spouses of people with dementia. Journal of Aging and Mental Health,
22, 299–305. DOI: 10.1080/13607863.2016.1248896.
39.
SampsonE. L.GouldV.LeeD.BlanchardM. R. (2006).
Differences in care received by patients with and without dementia who died during acute hospital admission: A retrospective case note study. Age and Ageing,
35, 187–189.
40.
SandersS.CorleyC. S. (2003).
Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer’s disease. Social Work in Health Care,
37, 35–53. DOI: 10.1300/J010v37n03_03.
41.
SantulliR. B.BlandinK. (2015). The emotional journey of the Alzheimer’s family.
Lebanon, NH:
Dartmouth College.
42.
SchulzR.BelleS. H.CzajaS. J., et al. (2003).
Introduction to the special selection on resources for enhancing Alzheimer’s caregiver health (REACH). Psychology and Ageing, 19, 357–360. DOI: 10.1037/0882-79743.357.
43.
SchulzR.BoernerK.ShearK. S.ZhangM. S.GitlinL. N. (2006).
Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. The American Journal of Geriatric Psychiatry,
14, 650–658. DOI: 10.1097/01.JGP.0000203178.44894.db.
44.
SchulzR.MartireL. (2004).
Family caregiving of persons with dementia: Prevalence, health effects and support strategies. The American Journal of Geriatric Psychiatry,
12, 240–249.
45.
ShanleyC.RussellC.MiddletonH.Simpson-YoungV. (2011).
Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia,
10, 325–340.
46.
ShearK. M. (2010).
Complicated grief treatment. The theory, practice and outcomes. Bereavement Care,
29, 10–14.
47.
SinhaP.DesaiN. G.PrakashO.KushwahaS.TripathiC. B. (2017).
Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India. Asian Journal of Psychiatry,
26, 86–91.
48.
SmallN.FroggattK.DownsM. (2007). Living with dementia: Dialogues about palliative care.
Oxford, UK:
Oxford University Press.
SmithJ. A. (2011).
Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review,
5, 9.
51.
StieberR. K. (2006).
Understanding social changes in the experience of dementia. Alzheimer’s Care Quarterly,
73, 185–193.
52.
SweetingH.GilhoolyM. (1997).
Dementia and the phenomenon of social death. Sociology of Health & Illness,
19, 93–117.
53.
ThomasK.HudsonP.TrauerT.RemediosC.ClarkeD. (2014).
Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study. Journal of Pain and Symptom Management,
47, 531–541.
54.
TretteteigS.VatneS.MorkR. A. M. (2017).
The influence of day care centres designed for people with dementia on family caregivers – A qualitative study. BMC Geriatrics,
17, 5. Open Access. DOI: 10.1186/s12877-016-0403-2.
55.
van der SteenJ. T.van Soest-PoortvlietM. C.GijsbertsM. J.Onwuteaka-PhilipsenB. D.AchterbergW. P.RibbeM. W., … de VetH. C. (2013).
Improved end-of-life care for patients with dementia: Greater family satisfaction and possibly greater end-of-life comfort. Nederlands tijdschrift voor geneeskunde,
157, A5324–A5324.
56.
WilsonH. S. (1989).
Family caregiving for a relative with Alzheimer's dementia: Coping with negative choices. Nursing Research,
38, 94–98.
