1. Paper Presentation: Carers of Older People with Dementia By Dr Jonathan Hutchins, Clinical Psychologist Division of Clinical Psychology Conference 2012

2. Abstract Introduction: This paper is a report of a study that examined how carers of people with dementia cope. Methods: Used a purposive sampling method to access 13 carer givers of older people with dementia and interviewed using a semi structured interview Results: A thematic analysis was done on the data and three core themes became evident during the analysis: how they feel, what they do and what they think about the person they care for and their situation. Conclusions: Care givers highlighted methods of coping in terms of focusing on the here and now as well as areas of service improvement in terms of requesting more respite care and more home visits from local services. Clinical Implications: Helping carers to get a routine, to focus on the here and now and to help them to concentrate on what they have agency over may help them cope better with there experiences.

3. Introduction The National Dementia Strategy highlights that with the ageing population there will be up to 1.4 million people living with Dementia in the UK by 2038 (Department of Health, 2009). Currently two thirds of people with dementia live at home with carer relatives (Department of Health, 2009). Need to know what helps carers cope from a service perspective.

4. Introduction (2) Literature review at the time of the study (2007) revealed a gap in that there were relatively few qualitative research studies investigating how carers cope with a relative with dementia. Research question: How do carers of a relative with dementia cope?

5. Method Design: Qualitative design focused on specific experiences of carer’s of people with dementia. –Used semi structured interview with participants focused on their lived experiences of caring and how they coped on a day to day basis. Sample: Purposive sampling method found 13 participants through local Older Peoples Community Mental Health Team in the NHS. –Inclusion criteria were that they had to be a carer living with a person with a diagnosis of dementia.

6. Method (2) Participant demographics: Of the 13 participants that took part in the study 2 were male (15%) and 11 were female (85%). 2 (15%) participants were between the ages of 30 to 60, 4 participants (31%) were between the ages of 60 to 70, 4 (31%) were between the ages of 70 to 80 and 3 (23%) were between the ages of 80 to 100. All participants were white British (100%) Data Collection: Participants were contacted and when informed consent was given they were interviewed at their homes by the author. The data was collected between May 2006 and January 2007. Ethics: Ethical approval was sought and obtained from the local NHS trust the author was working within.

7. Results Completed three stages of thematic analysis and came up with three core concepts from interview transcripts. The original research question was seeking to discover: “How do carers of a relative with dementia cope ?” Therefore, the core concepts are related to what the carer does in response to the stressful situation they are in. The core concepts are as follows: 1.How they feel 2.What they do 3. What they think, or how they perceive the person they care for and there situation.

8. Results Core Concept 1: How carers felt Sadness: relation to themselves, in how things have changed, or the care recipient’s situation: “I was given a book about carers and found it depressing – I haven’t finished reading it yet”, “Its very sad as he can’t read anymore”, “I just get depressed, its never ending”. ‘There is no conversation with him; it does get you down repeating everything”. Another prominent theme was anxiety and apprehension over the future and about how things may change more: “I know I won’t be able to cope if it gets worse”, ‘I worry as to how much worse it will get’, “I’m frightened of what will come later”, “I don’t know what is going to happen in the future” There were also some examples of where possibly carers felt overwhelmed by their situation: “I haven’t found any of it manageable”, “It’s incredibly difficult”, “My life has been disrupted, really disrupted”.

9. Results Core Concept 2: What they did Social support: “The neighbours are very good, and will cheer you up.’, ‘I have good friends over the road and can drop in and see them anytime”. –Carers’ Groups – only 1 out of 13 carers considered this. Family support and shared family activities: “My daughter has been wonderful – all I’ve got”, “Family are very good – the girls phone up every day – they will often look in.” Hobbies/Interests: “I like gardening – its very therapeutic”, “We both do gardening and the allotment and grow vegetables”. Activities of daily living and routine: “I take the dog for a walk three times a day”, “I like to get out everyday somewhere – don’t like sitting in doors”.

10. Results Core Concept 3: What they think There were examples in the discourse where carers were coping well emotionally in response to their situation and the care recipient: “I never experienced anything like it before but I’m coping”, “I’m fairly optimistic”. Other aspects to carers’ thinking were highlighted in terms of them being concerned over the future, and how some carers may have managed this: “I live day to day – I don’t think too deeply about future”, “I will cope as long as I can”.

11. Discussion The core concept of what carers think supports the findings of recent qualitative studies, in terms of carers focusing on the here and now in order to prevent anxiety when thinking about the future and the progression of the dementia. (Quinn et al., 2008, Robinson, Clare, Evans, 2005, Morano, 2003, Cooper et al., 2005). Carers said that they found social support from their family, friends and neighbours to be very important. This finding is similar to other research studies (Quinn et al., 2008, Robinson, Clare, Evans, 2005, Grazyna, Zygfryd 2003). –These findings could also support clinical recommendations from other research that intervention in the family of the care recipient could reduce carer stress (Agnes et al., 2004).

12. Discussion (2) An interesting finding from this project was that only one carer out of the 13 in the study attended a carers group and most did not have any awareness or intention of engaging in one. This may suggest that this type of service provision is not as useful to carers in contrast to some research suggesting that carer groups have high effectiveness (Hoskins et al., 2005). Another interesting finding was how carers appeared to experience a sense of agency or control over their lives in relation to their hobbies and interests. Carers also highlighted how they lived on a day to day basis and the importance of having a daily routine which supports other research findings (Perry, 2002).

13. Conclusions Findings highlighted a range of individualised coping strategies that carers used. Study highlighted that carers found it useful to focus on the here and now and on what they had agency over in terms of there hobbies and routine. –This finding may warrant future research as it may be another way to support carers.

14. Clinical Implications and Take Home Messages 1.Helping carers to focus on the here and now and helping them to get a routine may be helpful. 2.Helping carers to get more social support from friends and family may also be helpful. 3.Giving them the full range of information about services, including respite care and more home visits may also be helpful.

15. References Agnes, M., Weber, K., Gargiulo, M., Canuto, A., Giardini, U., Giannakopoulos, P. (2004). Caregiver burden in dementia: Determinants and interventions. Schweizer Archiv fur Neurologie und Psychiatrie. Vol 155(5), 217-224. Cooper, C., Katona, C., Orrell, M., Livingston, G. (2005). Coping strategies and anxiety in caregivers of people with Alzheimer’s disease: The LASER- AD study. Journal of Affective Disorders, Vol 90 (1), 15-20. Department of Health. (2009). Living well with dementia: A National Dementia Strategy. Department of Health Publications. Grazyna, A., Zygfryd, J. (2003). Strategies of coping with stress in caregivers of patients with Alzheimer’s disease. Archives of Psychiatry and Psychotherapy, Vol 5(4), 39-49. Hoskins S., Coleman M., McNeely D. (2005). Stress in carers of individuals with dementia and community mental health teams: An uncontrolled evaluation study. Journal of Advanced Nursing, Vol 50(3), May 2005. pp. 325-333.

16. References (2) Morano, C.L. (2003). Appraisal and coping? Moderators or mediatros of stress in Alzheimer’s disease caregivers?. Social Work Research, Vol 27(2), 116-128. Perry, J. (2002). Wives giving care to husbands with Alzheimer’s disease: A process of interpretative caring. Research in Nursing & Health, 25, 307–316. Quinn, C., Clare, L., Pearce, A., van Dijkhuizen M. (2008). The experience of providing care in the early stages of dementia: An interpretative phenomenological analysis. Aging & Mental Health, 12, 769–778. Robinson, L., Clare, L., & Evans, K. (2005). Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couple. Aging & Mental Health, 9, 337– 334.