The Advanced Dementia Care at Home Pilot in Bexleyoxleas.nhs.uk/site-media/cms-downloads/The_Advanced_Dementia_… · Microsoft PowerPoint - Ppt0000004.ppt [Read-Only] Author: COOKSS

The Advanced Dementia Care at Home Pilot in Bexley

Dr. Monica CrugelST6 in Old Age Psychiatry‘Darzi’ Fellow 2011-2012

Oxleas Older People Mental Health

The Advanced Dementia Care at Home Project (ADC@H)

Period: August 2011 - August 2012

Staff: •0.1-0.2 WTE ‘Darzi’ Fellow (Old Age Psychiatrist)•0.1-0.2 WTE Advanced Primary Nurse. •0.1-0.2 WTE Dementia Social Worker joined later

Caseload: 12 patients

Funding: no local funding

Aims

Integrating at patient level:

mental health physical health and social care expertise

for patients with advanced dementia living at home and their carers

Aims

o Comprehensively asses and plan ahead

o Review regularly and care co-ordinate

o Respond quickly when needs are changing

o Establish a palliative care framework

o Offer good care towards and at the end of life

o Relieve the carer from having to navigate alone within a

complex care system

Advanced Dementia Care at Home ProjectReferral Criteria

The patient has moderately severe or severe dementia as per Global Deterioration Scale (GDS) stage 6 or stage 7

AND The patient needs a more palliative approach to their care suggested by:

The clinician would not be surprised if the patient were to die in the next 6-12 months

OR there are: recurrent infections, significant weight loss and poor nutrition level,

recurrent fevers, pains, falls, severe pressure ulcers that are not easily amenable to treatment, severe physical frailty, other (specify).

OR the patient has: severe, persistent distress (mental or physical) that is not easily amenable to treatment

OR there is: another condition (e.g. co-morbid cancer) whose coexistence with

dementia means that more intrusive treatments would be less appropriate.

Bexley patients with advanced

dementia living in the community

DarziFellow

Physical problems

Psychiatric (BPSD)

Medication Review

Nutrition

Continence

Sleep

Swallowing

Skin integrity

Equipment

Patient QOL

Carer Stress

Mobility/rigidity

Equipment

Care Package

Respite/Phased care

Day Care

Spiritual

Palliative and end of life care

Care Package

Carer Education and Support

Continuing Care

Physical problems

Psychiatric (BPSD)

Medication Review

Nutrition

Continence

Sleep

Swallowing

Skin integrity

Equipment

Patient QOL

Carer Stress

Mobility/rigidity

Equipment

Care Package

Respite/Phased care

Day Care

Spiritual

Palliative and end of life care

Care Package

Carer Education and Support

Continuing Care

Personalised Care Plan,

Care co-ordination, referrals, liaison and delivery of care

Regular reviews &

Crisis Number

Data Collection & Audit

(e.g. N/demographics of in service , length of stay in the service, N patients that died at home, N days/episodes of hospital admission, interventions & time, carer stress, QUALID)

Reports to GP

Bereavementsupport

ADC@H Outcomes

• Demographic data patient + carer• Dementias and Co-morbidities• Interventions• Number of days and episodes of hospital admission• Carer stress – Relative stress scale at start then

every 3 months• QoL measure QUALID at start then every 3 months• Number of patients who died at home. • Focus groups with carers

CaseloadPATIENTS•30% (4) Male•Average Age = 82y; range 75y-91y

MAIN CARERS•Average age = 70y; Range 50y-87y•Spouses =7 (5 husbands)•Sons/daughters/niece = 5 (2 sons)

Diagnosis

Type of dementia Alzheimer's 41% Vascular 25% Mixed 8% Unspecified 8% Parkinson's 16%

Time since diagnosis: 1 year: 2 4-6 years: 7 10-12 years: 3

Co-morbidities/Problems

0 2 4 6 8 10 12

Regular follow‐upDiscussion about the need for palliative…

Carer education and supportUrgent visits

Medication changesPsychiatric

Psychology (carer)Care Packages/Respite/Day care

Continuing Care AssessmentNutrition advice

Swallowing adviceContinence (referrals for reviews)

Tissue viabilityEquipmentPain control

End of life care

Interventions (advice or referrals)

7 of the 12 patients died over the 12 months 

Survival

Place of Death

At home (3) or regular respite (2)Hospital1 admitted from home1 admitted from respite

Patients

Quality of Life in Late Stage Dementia Scale

55

Relatives Stress Scale

Fig 2. The Advanced Dementia Care at Home Project (ADC@H) in the context of the local health and social care services  Mental Health Trust + Community Care Trust APN= Advanced Primary Nurse; DF= ‘Darzi’ Fellow; DSW= Dementia Social Worker; OT= Occupational Therapist; CRHT = Community Rehabilitation Services; SALT = Speech and Language Therapy; DNs= District Nurses LAS= London Ambulance Service; OPMH= Older People Mental Health 

GPs 

OPMH Community Services 

Social Services 

Out of Hours GPs  Acute Hospitals 

Community Services 

DNs 

SALT

CRHT 

OT

OT

Psychology

LAS 

Palliative Care 

Services 

Voluntary Services 

Physiotherapy

Carers’ Services

Virtual Ward

Specialist Nurses 

ADC@H 

     DSW 

      DF 

     A

PN 

A&E

• 50% of patients accessed 5‐7 services 

• 50% of patients accessed 8 or more services

Daughter, main carer

Daughter, main carer

We need schemes like this as the hospitals will not be able to cope and they will rely more and more on families to be able to do it and you need to be able to know how to do it.

We need schemes like this as the hospitals will not be able to cope and they will rely more and more on families to be able to do it and you need to be able to know how to do it.

Before you [the service] became involved I had no

clue who to contact

Before you [the service] became involved I had no

clue who to contact

Son, main carerSon, main carer

You [the service] were very good but without your influence, when you try to call services you find yourself up against a wall.

Son, main carer

Carers’ views

Until this service got involved I did not know what you can get, who you can get. All the support I get now I did not have before.

Until this service got involved I did not know what you can get, who you can get. All the support I get now I did not have before.

Daughter, main carerDaughter, main carer

The nurse would come and do all she needed to do, do the tests and so on and then, and this is what I liked about her, and this is very important, unlike the authoritarian style of people talking to you, she would sit down for a few minutes discussing what tablets she [the patient] should take. And then, she would call to find out how she [the patient] was doing with the change. She knew what was going on.

The nurse would come and do all she needed to do, do the tests and so on and then, and this is what I liked about her, and this is very important, unlike the authoritarian style of people talking to you, she would sit down for a few minutes discussing what tablets she [the patient] should take. And then, she would call to find out how she [the patient] was doing with the change. She knew what was going on.

Husband, main carerHusband, main carer

Carers’views

Being able to pick up the phone and speak to you, doesn’t matter if it is about dad or mom, if it is about pads, feeding or medication, it is phenomenal.

Being able to pick up the phone and speak to you, doesn’t matter if it is about dad or mom, if it is about pads, feeding or medication, it is phenomenal.

Daughter (not main carer)Daughter (not main carer)

It’s about responsibility. We had all these people involved in mom’s care and she was going to the Day Centre and seeing all these professionals but the responsibility was no-ones.

It’s about responsibility. We had all these people involved in mom’s care and she was going to the Day Centre and seeing all these professionals but the responsibility was no-ones.

Daughter, main carerDaughter, main carerCarers’

views

Without this service we’d be lost. Mom would be in a care

home and dad faded away by now. We had a better year this

year than we had in a long time because of mom being looked

after at home which I think is fantastic.

Without this service we’d be lost. Mom would be in a care

home and dad faded away by now. We had a better year this

year than we had in a long time because of mom being looked

after at home which I think is fantastic.

Daughter (not main carer)Daughter (not main carer)It is the continuity of care for my mother [the patient] especially but also for my father [main carer] that are so important.

It is the continuity of care for my mother [the patient] especially but also for my father [main carer] that are so important.

Daughter (not main carer)Daughter (not main carer)

Carers’views

Further developments

• Selected in Kings’ Fund research on care co-ordination as demonstrator site.

• Continue a Greenwich and Bexley advanced dementia service

• Strengthen partnership with GPs• Strengthen links with the acute care sector • Strengthen links with out of hours services