General practitioners caring for people with dementia and their carers

Dr Catherine Speechly1, Ms Belinda Giles1, Prof Charles-Bridges-Webb1, Dr Yvonne Zurynski2, Dr Navaz Hiramanek3

1RACGP NSW & ACT Faculty, Projects Research & Development Unit2Primary Health Institute3University of Sydney, Discipline of General Practice

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

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

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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

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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

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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”

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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

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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)

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Audit Results

• 25 patients aged between 72-91• 56% Male• Type of dementia:

– Alzheimer's 38%– Vascular 26%– Uncertain 24%– Other 12%

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Audit Results

• Severity of dementia– Mild 33%– Moderate 54%– Severe 12%

• MMSE not known to GP56%

• Duration of dementia 3+yrs 31%• Medication for dementia

24%

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Audit Results

• Comorbidities 92%– Three or more conditions 52%

– Hypertension 44%– Diabetes 15%

– Depression 38%– Other psychiatric diagnosis 20%

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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)

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Audit Results

• Most common behavioural problems– Poor memory 44%– Reduced emotional control42%– Poor thinking/planning 36%

• A management strategy in place for the problem for fewer than ½ the patients

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Audit Results

• Most patients needed at least some assistance with activities of daily living– Bathing and dressing 52%– Walking 40%– Toileting 36%– Feeding 28%

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Carer Questionnaire

• 107 carers (30 GP, 77 AA)• Female 80%• Married 82%• Spouses 68%, sons/daughters 26%• Caring for:

– 2-5 years 62%– Over 5 years 23%– Under 2 years 15%

• Most lived in or visited daily 84%• Most had same GP as patient 70%

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Carers – Services used

• Commonly used services– Aged care assessment team 48%– Alzheimer's Association* 44%– Respite care 30%– Daycare 24%– Carer support group 24%

• 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)

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Carers – Health

• Most carers said that being a carer had affected their health (61%)

• All carers had medical problems– Arthritis 54%– Hypertension 47%– Anxiety 44%– Depression 36%

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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”

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Carers – Burden

• Zarit Burden Scale (22-item)– Person with dementia dependent on them

85%– 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 lives

34%

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Carers - Burden

Zarit Burden Scale – higher score indicates greater degree of burden (n=107)

• 0-20 Little or no burden10%

• 21-40 Mild-moderate burden 26%• 41-60 Moderate-severe burden

49%• 61-88 Severe burden 8%• Missing 7%

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Carers - Burden

All carers (n=107) – Level of burden

05101520253035404550

%

Little/N

o

Mild/M

od

Mod/Severe

Severe

Missing

Degree of Carer Burden

%of carersfitting intolevel ofburdencategory

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Carers - Burden

AA Carers (n=77) – Level of Burden

0

10

20

30

40

50

60%

Little/N

o

Mild/M

od

Mod/Severe

Severe

Missing

Degree of Carer Burden

%of carersfitting intolevel ofburdencategory

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Carers - Burden

GP Carers (n=30) – Level of Burden

0

5

10

15

20

25

30

35

40

%

Little/N

o

Mild/M

od

Mod/Severe

Severe

Missing

Degree of Carer Burden

%of carersfitting intolevel ofburdencategory

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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

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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

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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

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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

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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