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