1. General practitioners caring for people with dementia and their carers Dr Catherine Speechly 1, Ms Belinda Giles 1, Prof Charles- Bridges-Webb 1, Dr Yvonne Zurynski 2, Dr Navaz Hiramanek 3 1 RACGP NSW & ACT Faculty, Projects Research & Development Unit 2 Primary Health Institute 3 University of Sydney, Discipline of General Practice

2. 2 Background Whilst developing clinical guidelines for GP care of patients with dementia living in the community we could find little information about the current management and status of this group GPs are a common first point of contact for patients with dementia and their carers

3. 3 Background The Bettering the Evaluation And Care of Health (BEACH) study of general practice in 1998-2000 showed: Only 21% of 3000 GPs reported any encounter with a patient at which dementia was treated within their reported 100 patient encounters. 39% of these encounters were in a nursing home

4. 4 Aim To develop an educational module for GPs which included clinical audit of practice and an educational workshop To determine carer health, level of burden and satisfaction with services To develop a pamphlet detailing the help carers might seek from a GP Funded by the Bernard Judd Foundation

5. 5 Subjects GPs - self-selected within the Illawarra Division of General Practice, NSW Patients – clinical diagnosis of dementia, still living in the community Carer – primary carer of person with dementia, known to GP

6. 6 Clinical Audit Few GPs participated in the audit GPs (n=8) audited their clinical care of patients with dementia (n=25) The instrument was based on the RACGP and NSW Health “Guidelines for the Care of Patients with Dementia in General Practice”

7. 7 Educational workshops Workshops for GPs Quiz format based on the Guidelines –Questions with referral to Guidelines for answers Discussion of audit findings GP participation and evaluation good

8. 8 Carer Questionnaire -Recruited through GP (n=30) -Recruited through Alzheimer's Australia (n=77) Carer demographics Health Satisfaction with community services Level of Burden (22-item version of the Zarit Burden Scale)

9. 9 Audit Results 25 patients aged between 72-91 56% Male Type of dementia: –Alzheimer's38% –Vascular26% –Uncertain24% –Other12%

10. 10 Audit Results Severity of dementia –Mild33% –Moderate54% –Severe12% MMSE not known to GP56% Duration of dementia 3+yrs31% Medication for dementia24%

11. 11 Audit Results Comorbidities92% –Three or more conditions52% –Hypertension44% –Diabetes15% –Depression38% –Other psychiatric diagnosis20%

12. 12 Audit Results General health assessments performed for 2/3 patients in past 12 months Home safety not assessed for 44% in past 12 months Legal matters discussed with patient or family for less than half (driving, enduring power of attorney or guardianship, will)

13. 13 Audit Results Most common behavioural problems –Poor memory44% –Reduced emotional control42% –Poor thinking/planning36% A management strategy in place for the problem for fewer than ½ the patients

14. 14 Audit Results Most patients needed at least some assistance with activities of daily living –Bathing and dressing52% –Walking40% –Toileting36% –Feeding28%

15. 15 Carer Questionnaire 107 carers (30 GP, 77 AA) Female 80% Married 82% Spouses 68%, sons/daughters 26% Caring for: –2-5 years62% –Over 5 years23% –Under 2 years15% Most lived in or visited daily 84% Most had same GP as patient70%

16. 16 Carers – Services used Commonly used services –Aged care assessment team48% –Alzheimer's Association*44% –Respite care30% –Daycare24% –Carer support group24% 23% mentioned a service that would have been useful but not available Most carers felt supported by their GP in their carer role (86%) (*more often AA carers)

17. 17 Carers – Health Most carers said that being a carer had affected their health (61%) All carers had medical problems –Arthritis 54% –Hypertension47% –Anxiety44% –Depression36%

18. 18 Carers - Health How caring affected carers’ health: “Being a carer has caused high blood pressure and lots of stress” “I am taking (antidepressants) to help me in the care for my wife” “Constantly tired, stressed, lonely, isolated“ “I have been unable to have an operation last year as my husband will not go to respite” “Muscle strains, back pains caused by lifting, lack of opportunity for regular exercise, sleep deprivation”

19. 19 Carers – Burden Zarit Burden Scale (22-item) –Person with dementia dependent on them85% –Afraid for what the future held for the person 59% –Not enough time for self/social life suffered 45% –Frequently or always felt burdened by caring 39% –Felt they had lost control of their lives34%

20. 20 Carers - Burden Zarit Burden Scale – higher score indicates greater degree of burden (n=107) 0-20 Little or no burden10% 21-40 Mild-moderate burden26% 41-60 Moderate-severe burden49% 61-88 Severe burden8% Missing7%

21. 21 Carers - Burden All carers (n=107) – Level of burden

22. 22 Carers - Burden AA Carers (n=77) – Level of Burden

23. 23 Carers - Burden GP Carers (n=30) – Level of Burden

24. 24 Pamphlet We developed a pamphlet as a guide to the type of help carers might seek from their GP Currently sourcing funding for pamphlet to be distributed to GPs and carers www.racgp.org.au/dementiacarer

25. 25 Pamphlet Primary sources of information –“The carer experience – an essential guide for carers of people with dementia” Commonwealth of Australia, 2002 –Results of carer questionnaire –Focus groups with carers and draft pamphlet with assistance of Alzheimer's Australia

26. 26 Summary GP care of patients with dementia – clinical/daily living activities attended to more commonly than legal issues –Low take-up of audit means it is not representative –However these were GPs with an interest Educational workshops were well received –GPs stated it was a difficult but important topic –A very small part of most doctors’ practice

27. 27 Summary Carers demonstrated a high level of burden and a belief that caring had affected their health –Most cared daily for at least 2 years –Affecting mental as well as physical health

28. 28 Contact Prof Charles Bridges-Webb – Director Dr Catherine Speechly – Research Officer Projects Research and Development Unit NSW & ACT Faculty RACGP Email nsw.research@racgp.org.au Ph: 9886 4749/ 9886 4735