Informal Carers' Views on Potential Move to a Care Home

1. “If he goes into a home he is going to die”: Informal carers’ views on a potential move to a care home Christina Hutton & Dr. Tushna Vandrevala

2. Background • One in six people over the age of 80 has dementia (Alzheimer’s Society, 2007) • It is estimated by 2025 one million people will have dementia (Alzheimer's Society, 2007) • Approximately two thirds cared for at home despite financial, social, physical and psychological burden for the carer (Alzheimer’s Society, 2007) • Carers themselves may be in ill health, ill prepared or ill inclined • Any of which can lead to residential care

3. Possible reasons for consideration of a care home • Disease symptoms and severity and the impact of the carer • Relentless progression of the disease – mobility and the ability to perform daily living (Alzheimer’s Society, 2016) • Behaviour – aggression, insomnia, incontinence, wandering (Moyneaux et al, 2008)

4. Reasons for consideration of care home • Carer factors • Physical and mental health – eg. Carer burden,(Spitzangle et al, 2006), depression (Moyneaux et al, 2008) and grief (Warchol-Biederman et al, 2014) • Financial problems (Georges et al, 2008) • Relationship to PWD (Happerstall et al, 2012)

5. Reasons for consideration of care home • Professional input • Decision is often expert driven (McAuley et al, 1997) • Carers ease into roles so don’t realise the level of care they are giving until its too late (Montgomery & Koslowski, 2009)

6. Reasons for the PWD to stay at home • Emotional aspects – 70% of public are worried about ill effects of residential care (Quince, 2013) • Guilt – can last many months after admission (Armstrong, 1999) • Positive aspects – 73% of participants studied had at least one positive aspect of caring e.g. companionship (Cohen, 2002) • Availability of care – There needs to be a greater input from residential care. Respite can delay institutionalisation (Thomas et al, 2004)

7. Research methodology • Aim • To investigate the informal carers decision-making process on moving a family member with dementia into a care home • Participants and Recruitment • 6 participants (3 male and 3 female between 39 to over 50 years old) from local support groups, advertisements and word of mouth • Data Analysis • Thematic Analysis (Braun & Clarke, 2006)

8. Findings

9. Nature of the disease • Progression of the disease • The disease and it’s progression affected the personality of the PWD encroached on the relationship • PWD’s mental and physical deterioration a struggle • Gaining family support was important in the decision making process “I mean, it’s shes no longer in sense a wife. I mean we can’t exchange ideas or conversations of anything like that” (David, Over 50 years old, caring for his wife, 31-40 hours a week for 1-5 years) “ .. His incontinence with faeces, is probably the hardest time for me … you think that you get almost ..immune… So you got through urine, then you have to deal with the incontinence with faeces. This is so tough.” (Anne 31-40 years old, caring for parent, over 50 hours per week for 1-5 years)

10. Nature of the disease • 2. Sudden decline • Sudden decline of the PWD was alarming • Hospitalisation a turning point as the start of sudden decline • Feelings of frustration and isolation leading to the thought process of residential care • “This isn’t a slow process, something has happened here. Has she had a stroke? Is her cancer come back, has she got a bleed on the brain …I felt like I was asking all the questions, whereas they should have been saying, let’s look at this, let’s look at that because it was such a dramatic fall”. (Mary, 51 year old, caring for her mother for 31-40 hours per week for 6 to 10 years)

11. Carer’s representation of “home” versus a Care Home • 1. Notion of a care home • Exaggerated fear of disorientation and loss of dignity • Previous experiences with a care home were disturbing • The sense of insecurity and guilt • “I’m not sure because I think if he goes into a home he’s going to die, you know …I think he is never going to be how he is looked after at home .. but that’s also the defensive side of you, you know”. (Anne, 31-40 years old, caring for her father for over 50 hours per week for 1-5 years).

12. Carer’s representation of “home” versus a Care Home • 2. Idealisation of “home” • Emotional attachment of home was very strong even though residential care was inevitable • Home gave the PWD the strength to continue with the continuation of a normal life and socialisation • An idealised notion of home, with the idea of control being lost and the fear of the unknown with residential care • “She likes it where she is ..being surrounded by everything she knows, she likes the comfort of her own home..she wants to get stronger, she wants to get fitter to go back to the garden”. (Stephen, 41-50 year old, caring for his mother for over 50 hours per week for 1-5 years).

13. Representation of being a (good) carer and meeting their own needs • 1. Adapting to the situation – extra care • Extra care essential • Day care facility for limited respite • Fear of the carer’s health deteriorating • Struggle in getting the extra care • “I wanted to manage by myself ..but it was becoming really difficult”. (Simon, over 50 years old, caring for his wife over 50 hours per week for 6-1- years).

14. Representation of being a (good) carer and meeting their own needs • 2. Adapting to the situation - behaviour • Different coping mechanisms with the constant challenging behaviour • The need to adapt to challenging behaviour • The feeling of loss/grief • “She hate’s me, totally, totally hates me and this was the lady that I had been close to, of course she’s my mother but we had an amazing relationship”. (Mary, 51 years old, caring for her mother for 31-40 hours for 6 to 10 years).

15. Representation of being a (good) carer and meeting their own needs • 3. Positive aspects of caregiving • Positive aspects to caregiving including companionship • Whole outlook on life had changed since becoming a carer • The rewarding feeling of caring for a loved one • “It completely changed my life. I’m actually much happier now than I used to be. There was always something missing and now I’m feeling really great with myself ..It gave me strength. It gave me self-confidence. It gave me positivity”. (Anne, 31-40 years old, caring for her father for over 50 hours per week for 1-5 years).

16. Representation of being a (good) carer and meeting their own needs • 4. Preparing for an uncertain future • The uncertain future a main concern • The health of the carer and would been the main trigger for residential care • Live in carer would be the best option “..you’re looking into the future and you think, my whole life is changing, you know….I find I worry now, when I never used to”. (Simon, over 50 years old, caring for his wife over 50 hours per week for 6-10 years). “..the biggest fear of all of this is if I crack, if something happens to me, then what is going to happen to them”. (Anne, 31-40 years old, caring for her father for over 50 hours per week for 1-5 weeks).

17. Discussion • In line with previous research participants felt a strong antipathy to the idea of a care home (Mimi, 2006) • There were positive feelings of the virtue of home • Residential care was a last resort (Armstrong 1999) • The idea of live in help was preferred to residential care • The physical decline of PWD and carer was a trigger in line with previous studies (Moyneaux et al, 2008)

18. Implications for practice • Understanding all complexities for tailor made support • Appropriate training for relevant professional • Disjointed support would benefit from a central dementia support person • Address the negative connotations of residential care home

19. References Alzheimer’s Society. (2007) Dementia UK Full Report. Alzheimer’s Society: London. Armstrong, M. (1999). Factors affecting the decision to place a relative with dementia into residential care. Nursing Standard. 14, 16, 33-37. Braun, V & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. Cohen, C. A., Colanonio, A. & Vernich, L. (2002). Positive aspects of caregiving: rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17. 184-188. Georges, J., Jansen, S., Jackson, J and Meyrieux, A. (2008). Alzheimer’s disease in real life – the dementia carer’s survey. International Journal of Geriatric Psychiatry. 23, 546-551. Heppenstall, C. P., Keeling, S., Hanger, H. C., Wilkinson, T. J. (2012). Perceived factors which shape decision-making around the time of residential care admission in older adults: A qualitative study. Australasian Journal of Ageing. 1, 9-13. McAuley, W., Travis, S. & Safewright, M. (1997). Personal accounts of the nursing home sear and selection process. Qualitative Health Research ,7(2), 36-254. Mimi, V, T. (2006). Nursing home placements: Perspectives of community-dwelling older persons. Journal of Clinical Nursing. 16(5), 911-917.

20. References Molyneux, G. J., McCarthy, G. M., McEniff, S., Cryan, M. and Conroy, R. M. (2008). Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service. International Psychogeriatrics. 26:6, 1193-1202. Montgomery, R. J. V & Kosloski, K. (2009). Caring as a Process of Changing Identity: Implications for Caregiver Support. Journal of American Society on Aging. 33, 47-52. Quince, C. (2013). Low expectations: Attitudes on choice, care and community for people with dementia in care homes. Alzheimer’s Society. www.alzheimers.org.uk/lowexpectations Spitznagel, M. B., Tremont, G., Duncan Davis, J. and Foster, S. M. (2006). Psychosocial Predictors of Dementia Caregiver Desire to Institutionalize: Caregiver, Care Recipient and Family Relationship Factors. Thomas, P., Ingrand, P., Lalloue, F., Hazif-Thomas, C., Billon, R., Viéban, F., Clément, J-P. (2004). Reasons of informal caregivers for institutionalizing dementia patients previously living at home: the Pixel study. International Journal of Geriatric Psychiatry. 19, 127-135. Warchol-Biedermann, K., Mojs, E., Gregersen, R., Maibom, K., Millán-Calenti, J. C. & Maseda, A. (2014). What causes grief in demential caregivers? Archives of Gerontology and Geriatrics, 59, 462-467

21. Thank you. Any questions? Christina Hutton Email: christinahutton@hotmail.co.uk Twitter: @clhutton11 Dr. Tushna Vandrevala Email: T.Vandrevala@Kingston.ac.uk Twitter: @Psych_Tush