Experiences of intimate continence care and the impact on the family dyad relationship for people with dementia and their cohabiting family carer

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Esmond Floyd
5 years ago
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with dementia and their cohabiting family carer

1 Experiences of intimate continence care and the impact on the family dyad relationship for people with dementia and their cohabiting family carer British Society of Gerontology 2018: Thursday July 5 th Laura Cole

2 Background Dementia: need for support in daily activities that may include using the toilet and managing incontinence (intimate continence care). People with dementia are x3 more likely to have urinary incontinence, and x4 more likely to have faecal incontinence than those without dementia living in the community For many people living at home with dementia, this type of intimate care is provided by a cohabiting family member (family dyad) Managing incontinence is a significant factor in the decision to move a person with dementia to a care home

3 Aims To explore the lived experiences of intimate continence care for people with dementia and their main family carer over time. 1. How do carers and people with dementia experience intimate continence care at home? 2. Do they perceive their (family dyad) relationship to be affected by the intimate continence care provided? If so, how? To consider the implications for health and social care professionals supporting people with dementia and their family carers.

Study design Methodology: longitudinal qualitative research Sample: People with dementia needing support with intimate continence care (managing incontinence or

4 Study design Methodology: longitudinal qualitative research Sample: People with dementia needing support with intimate continence care (managing incontinence or using the toilet), and their cohabiting family member Method: 3 semi-structured interviews with each participant over a year Analysis: descriptive phenomenological method

5 Data collection over time Characterising participants Interview 1 Interview 2 Interview current relationship Past and current relationship current relationship

6 Participant characteristics 13 family dyads 7 spouse, 5 parent-child, 1 sibling Late stages of dementia 13 family carers 1 person with dementia 10 urine / faecal incontinence

7 Findings 1. Family carers attitudes towards their situation 2. Involvement of health and social care services 3. Impact on the family dyad relationship

8 Impact on the family relationship a) Intimate continence care does not directly affect the family dyad relationship b) Intimate continence care makes the family dyad relationship stronger c) Indirect effects of intimate continence care on the family dyad relationship

Intimate continence care does not directly affect the family dyad relationship Not having to care for him hasn't affected the relationship but the fact is that we

9 Intimate continence care does not directly affect the family dyad relationship Not having to care for him hasn't affected the relationship but the fact is that we can t communicate, that affects it (Wife, P04).... it s continued our relationship it hasn t affected it... It, it it s the same because we just carry on (Husband, P11).

10 Intimate continence care makes the family dyad relationship stronger And the fact that, the fact that I m able to do all this for (person with dementia's name), has brought us much closer together. I might have thought that we were close then but a different sort of closeness when you're not relying upon somebody. [... ]. But now there's just the two of us, so of course there's all this time to spend together, and uh, and it's lovely, absolutely lovely [... ]. I don't know what it is. I suppose when somebody really needs you, and it's a pleasure to, to do it for them, um I suppose it's a different sort of love, you know, like a mother for her baby perhaps, who knows. I don't know (Wife, P01).

11 Indirect effects of intimate continence care on the relationship I had to not only help care for my mum, but I had to in effect battle with the authorities to even get that basic need for her [... ]. I think it s a bit of a scandal because um, in some way, indirect way, I m sure it had an impact, a detrimental impact on my mum. I m not saying permanently, but I m saying maybe the odd day or the odd afternoon it may have affected her in some way without me realising. Uh made, made me more tired and maybe I was a bit, sometimes I could get agitated with my mum because I was uh tired. Um, which is uh, which is a shame (Son, P06).... with the laundry, situation reduced by fifty percent. And um, the fact that I m getting a better night s sleep outweighs the other aspect of any sort of physical contact. As I say, she misses it, and I miss it you know, you just reach across and I ll hold somebody s hand feel that they re there. But there we are, that s, that s life (Husband, P07).

Practice Implications Silent subject - encourage health and social care practitioners to speak openly: incontinence difficulties with using the toilet Practitioners lacking knowledge and confidence

12 Practice Implications Silent subject - encourage health and social care practitioners to speak openly: incontinence difficulties with using the toilet Practitioners lacking knowledge and confidence in continence should learn about local and national resources. Mindful of not undermining the care provided by the main family carer - offering a service but it has to be acceptable. Carers support groups and services may offer continuity of support professionals to signpost and encourage / support these groups.

Disclaimer & acknowledgements This doctoral study is part of the EVIDEM Programme (Changing practice in dementia care in the community: developing and testing interventions from early recognition to

13 Disclaimer & acknowledgements This doctoral study is part of the EVIDEM Programme (Changing practice in dementia care in the community: developing and testing interventions from early recognition to end of life: independent research commissioned by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research scheme (RP-PG ). The views expressed herein are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health &Social Care. Many thanks to: Prof. Vari Drennan & Prof Eleni Hatzidimitriadou People with dementia & family carers Professionals who helped with recruitment

14 THANK YOU

Dementia Across Cultures Conference

Improving dementia care for African Caribbean patients and their families Dementia Across Cultures Conference Dr Dawn Edge The University of Manchester Pennine Care NHS Foundation NHS Trust Outline Context