Care Homes

Understanding the experience of people with Parkinson’s in institutional care and understanding the care needs of

people with Parkinson’s

Annette Hand Nurse Consultant/Associate Lecturer

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• Background

• Study overview

• Preliminary results/key findings to date

• Excellence Network

Care Homes Project

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PD Northumbria

Service

Service Overview:

• 3 Consultants

• 1 Nurse

Consultant

• Under 3 whole

time equivalent

PDNS

• 1393 Patients

• Clinic locations BritM

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PD Northumbria Issues in Practice

Poor respite experiences

Problems accessing funding for care and support

Difficult and frustrating clinic consultations

Care staff training issues

Concerns about quality of care

Crisis point leading to care home admission

Carer stress and burden

Difficulty supporting patients in a care home due to large geographical area BritM

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Background • Parkinson’s is one of the leading causes of institutionalization

(1)

• Studies have indicated that 20 -53% of people with Parkinson’s will require institutional care (2,3,4)

• Point prevalence of Parkinson’s patients who are

institutionalized 14% (5)

• Estimated 18,000 people with Parkinson’s live in a residential or nursing home setting (5 – 6)

1.Goetz CG, Stebbins GT (1995) , 2. Vossius et al (2009), 3. Aarsland et al (2000) 4. Hely et al (2008), 5 Porter et al (2006), 6. Walker et al (2014) BritMod

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Issues • Outcomes for people with Parkinson’s admitted to a care home

are worse than for those who are able to stay at home (7) • Institutional care is much more costly than care at home (8)

• No specific statements in the PD NICE guidelines (2006) in

relation to standards of good practice in care homes for PD (NICE 2006/SIGN guidelines 2010)

• Little published research of the profile and experiences of people with Parkinson’s who live in care homes, particularly from the UK

• Data on predictors for care home placement limited (9)

(7) Barnes et al (2006), (8) Findley (2007), (9) Aarsland D et al (2000)

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Research Study Primary Objective: To understand predictors of care home placement along with the experience of those already in care and identify difference service models to manage their needs. The study has three aims: • To understand the triggers for, and nature of, care home admissions for

people with Parkinson's living in the UK.

• To understand the care home experiences of people with Parkinson’s, their family members and healthcare workers.

• To investigate current models of care for people with Parkinson’s in the UK who may require care home placement. BritM

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Study Overview Part A Part B Part C Part D

Design Cross-sectional cohort study

Prospective, longitudinal study with 10 year follow up

Retrospective audit of medical notes

Surveys

Participants • People with PD in care home setting

• IPD H&Y 3< still living at home

• PSP • MSA • PDD • Informal carers (if

applicable)

• Southampton • Derby • Bath • Northumbria • Cumbria

• PDNS • PUK staff • Care Staff

Key outcome

• Profile of care home residents

• Experience of care home stay

• Profile of mid-late stage Parkinson’s

• Care requirements • Triggers to care

home placement • Identification of

issues related to caregiver burden

• Models of service delivery

• Prevalence of PwP in a care home placement

Overview of issues faced in managing and supporting patients

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All Patients:

Care home patients: Patients at home:

Data Collection – Part A and B

Demographics Medication PD Grading Medical history Cognition

Functional ability

Sleep Anxiety/depression Hallucinations Frailty

Nutrition Non-motor symptoms

Mobility levels Peak Flow QoL

Medical notes review Hospital Admissions Admitted from Hosp/home/respite

Service use (clinics/hospital admissions

Care requirements (formal and informal)

MDT support BritMod

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Greenwell et al (adapted from Goldsworthy and Knowles model) 2015

Carer Data Collection: Part B

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• Significant variation in age between care home and own home, but not in

disease duration. • Older age at onset is also likely to be associated with being in a care home. • H&Y stage was also predictive.

Background Population (Part of Northumbria Part C)

Care Home (n=91)

Own Home (n= 286)

P Value

Age (mean) 82.3 75.8 <0.001

Age (onset) 73.9 67.9 <0.001

Disease Duration (median)

7 7 n/s

Sex (% F) 49.5 42.3 n/s

H&Y Stage IPD/PDD n=84 IPD/PDD n=264

3 (%) 30.6 67.5 <0.001

4 (%) 47.1 27.9 <0.001

5 (%) 22.4 4.5 <0.001

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Part A – Care Home Patients

91 Patients (57 different homes) (66 IPD/18 PDD/6 PSP/1 CBD)

29 Deceased

62 Patients Able to give consent? 33 29

16 agreed 15 declined 2 still to f/u

7 agreed 19 declined 3 still to f/u

Y N

23 Participants consented and data collected- 9 interviews conducted BritMod

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Part B: Own Home 286 Potential Participants

H&Y Stage 3 </MSA/PSP/PDD

2 Moved out of area

17 Deceased

20 Moved into Care Home

75 Declined 164 Patients consented and data collected

125 Informal carers consented

5 Gone into care home

9 Deceased

2 Deceased

8 Palliative/too poorly

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2015 – Who went into Care?

29 people moved into a permanent Care Home

placement

5 People from Part B

21 People identified in Part B (20 moved before being seen and 1 had declined)

3 Not identified (1 - drug induced/ 1- ‘ism’, 1- stage 2)

26 Patients Diagnosis: 1 – PSP 2 – MSA 5 – IPD 8 – PDD 10 – IPD with MCI

6 Deceased

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Part D - Surveys

• Surveys designed following focus groups for: – PDNS – Parkinson’s UK information staff – Care Home Staff (North Tyneside and Northumberland)

• PDNS survey – 159 returned surveys (210 sent) • Parkinson’s UK – 69 returned surveys (174 sent) • Care Home Staff – 53 returned surveys to date

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Parkinson’s UK - Initial Key Findings Models of care and barriers to care access

In the past 12 months:

28% often or frequently spoke to someone who had never received support

15% often spoke to someone no longer receiving support from a specialist service.

38% often or frequently had requests to recommend care homes but were unable to do this.

Service improvement suggestions • The use of individualised care plans • Greater access to therapy services • Improved education in Care Homes • Signposting to specialist homes BritM

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PDNS- Initial Key Findings Models of care and barriers to care access

Over 95% did not discharge PwP when they moved into a care home

84% were able to review PwP in their care home (51% reviewing 6 monthly and 21% only as required)

11% reviewed the PwP via the phone

Some patients were visited less frequently in care homes due to staff covering large geographical areas

Each PDNS typically covered 20-40 different care homes (averaging 2-3 PwP per home)

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Parkinson’s UK • 83% received

requests for training in care homes

• 64% reported negative experiences of respite or care home placements frequently linked lack of specialist training

• Barriers to training: Staff time, low attendance and high staff turnover

Initial Key Findings Role of staff training

PDNS • Views mirrored

those of Parkinson’s UK staff experiences

• 38% of PDNS said they were not able to train care home staff

Care Home Staff • 96% of CHS have at

some point cared for a person with PD

• 40% had never received training in Parkinson’s

• Many staff, even without training felt confident in caring for a person with PD

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• There are still large numbers of people with Parkinson’s who

do not receive support from a specialist service.

• Multiple barriers to managing this group of people were

identified.

• Some very good examples of practice but there was no clear

standard model of care.

• An awareness across all groups that a lack of training was a

major barrier to providing quality care in care homes.

Survey Conclusions

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Excellence Network • Linked into the Underserved Group • Understanding what is happening Nationally • Share and promote areas of good practice • Move forward with any recommendations in a timely

manner that can benefit all people with Parkinson’s and their carers

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