5 Steps to Living Well with
Dementia
in South Tipperary
Genio/HSE funded project
Consortium
Dr. Caitriona Crowe, Consultant in Old Age Psychiatry & Project Lead
Noel Maher, Clinical Nurse Specialist in Old Age Psychiatry & Deputy Lead
Chris Rush, Person with Dementia
Marian Staunton, Person with Dementia
Marie Ryan, Person with Dementia
Helen Jenkins, Carer
Nan Hackett, Carer
Mary McGinn, Carer
Richie Molloy, The Carers Association
Martin Quinn, Muintir na Tire
Julie Whyte, Community and Voluntary Forum
Caitriona Lavelle, The Alzheimer's Society
Dr. Damian Sharpe, General Practitioner
Esther Butler, Director of Public Health Nursing
Ann-Marie Slavin, Public Health Nurse
Dr. Christina Donnellan, Consultant in Geriatric Medicine
Dr. Isweri Pillay, Consultant in Geriatric Medicine
Catherine Sheehan, Clinical Nurse Specialist in Old Age Psychiatry
Elaine O Donnell, A/Clinical Nurse Specialist in Old Age Psychiatry
Anne Quinn, Advanced Nurse Practitioner in Dementia
Simone McGoldrick, Occupational Therapist
Cáit Mackey, Occupational Therapist
Bridget Farrell, HSE Manager Co-Ordinator of Elderly Services
Di Murphy, HSE Home Help Co-Ordinator
Emma Moloney, Social Worker
Background
South Tipperary received joint funding by Atlantic Philanthropies and
the HSE through the Genio Trust.
Genio is a non-profit organisation that focuses on supporting and
stimulating social innovation that brings about lasting change.
This project is led by a consortium of people with various interests in
the area of dementia.
This consortium includes people with dementia, carers, The
Alzheimer’s Society, The Carer’s Association, Muintir na Tire, The
South Tipperary Community & Voluntary Forum, a G.P.
representative and HSE staff.
www.southtipperarydementia.ie
Aims
•
•
•
•
We want to transform the life experience of people with
dementia and their families in South Tipperary.
We want to increase public awareness, dispel myths, reduce
stigma and encourage people to come forward earlier for
diagnosis and treatment.
We want to emphasise that dementia is something you live
with, not necessarily something you die of and we want to help
people with dementia to live enriched and happy lives.
For some families a diagnosis of dementia is like a death
sentence. We want to transform that perception with
information and support.
But most of all we want to provide flexible person-centred care
in the home to allow people to continue living at home for as
long as is possible.
www.southtipperarydementia.ie
Step 1 Pre-Diagnosis
• Raising awareness in the general public about dementia,
dispelling myths and attempting to reduce stigma.
– art competition for secondary school students in South
Tipperary to design our 5 Steps project logo, which is the
symbol of the project.
– lapel pin bearing the project logo to promote dementia
awareness.
– media campaign involving local radio, Tipp FM and Tipperary
Mid West radio, as well as local and national newspapers.
– website
– Awareness training about dementia is being delivered for
professionals, dementia support workers and volunteers and
a Fetac Level 6 Training Course in Dementia “Training the
Trainers” is being developed to support the sustainability of
the project.
Community Connector
Volunteers
Lonradh Arts Programme
www.southtipperarydementia.ie
Step 2 Early Dementia
• Most people receive the diagnosis of dementia from our
Memory Clinic or from their GP in South Tipperary.
• Research has shown that people in the early stages prefer
to know their diagnosis and need timely and accurate
information about the illness.
• Experience from our memory clinic would indicate that
many people experience difficulties three to four months
post diagnosis, becoming fearful for the future and
struggling to get on with their lives.
• We have provided post - diagnostic support groups across
South Tipperary in the past year.
• We have established a single point of contact for the
project.
www.southtipperarydementia.ie
Step 3 Progressive Dementia
• This step is about supporting people with dementia
and their carers at home and within their own
communities. Home based support is an individualised
support aimed at improving quality of life and meeting
the individual needs of People with dementia and
their carers. The support is provided to people in their
own home or in a community setting.
• This support is delivered by our Dementia Support
Workers (DSW) and in some cases involves the
community connector.
• It also aims to delay the need for long term care
allowing people to remain living at home and as active
participants in their own communities.
www.southtipperarydementia.ie
Step 4 Advanced Dementia
• Step four has seen the development of the Memory
Technology Library, on the grounds of South
Tipperary General Hospital, Clonmel.
• The Memory Technology library is for people with
memory difficulties and dementia, and their family
and friends.
• We have sourced a large range of products, Assistive
Technologies (A.T.) that are useful for people with
memory difficulties.
• This library offers a dementia friendly space where
these products can be seen and tried out with a
member of staff on an individual basis.
www.southtipperarydementia.ie
Step 5 Dying Well with dementia
• The final step of the project is about
finding out what people with
dementia, their families and their
carers want at end of life.
• It also explores healthcare
professional views.
• We have gathered the views and
attitudes of carers, people with
dementia and their families.
• We hope this will help to inform how
to plan end of life services for people
with dementia into the future.
www.southtipperarydementia.ie
The process...
We went to the consortium and set up a subgroup,
who made a plan, which (very cleverly!) included
Limerick Institute of Technology.
LIT advised us to do some
questionnaires and some focus
groups.
We came up with about 90
questions in 3 questionnaires
over the course of.....
You heard that correctly, the first YEAR, during
which I would sit in the consortium and try to
celebrate the addition of another couple of
questions since the last meeting!
Then the cavalry arrived!
Elaine O Donnell
Co-Chair Step 5
Regular meetings on a Friday afternoon
Liaising with fellow healthcare
professionals followed.
Questionnaires
We got responses from 56 carers, 150
healthcare professionals and found the
questionnaire format unsuitable for people
with dementia, over the course of the second
year.
Data entry followed
Focus groups
Hotel Minella
• We held 5 focus groups for people with
–
–
–
–
–
mild to moderate dementia
past carers of people with dementia who had died
carers of people with severe dementia
carers of people with moderate dementia
carers of people with mild dementia
The focus group data is in the process of being analysed
by LIT.
What was found
An exclusive preview!
How it feels to be a carer of
someone with dementia in South
Tipperary.
35
30
25
20
15
10
5
0
Happy to Pressurised Benefits Exhausting Advocacy
care
into carer outweighed
challenging
role
the
sacrifices
Feeling
alone
Worry
about end
of life
Carers questionnaire
(56 respondents)
• There were no surprising findings.
• In general,
– The majority of carers are spouses, living alone as a couple
(88%)
– Half are over the age of 65 years (52%).
– Most carers are caring for a single individual (89%) and half
had been carers for more than 3 years.
– Most (88%) find the memory loss of dementia difficult to
cope with.
– End of life care was not discussed by the majority (76%).
– Wills were in place in the majority (58%).
Carers continued
• Information is inadequate and/or difficult to
find for people with dementia.
• Most (80%) would like a healthcare
professional to discuss an end of life care plan
with them.
• Most (61%) feel it would influence decision
making at a later date.
• Most (62%) felt fully involved in major medical
decisions they had made to date.
Carers
• Most (90%) felt that their loved one would
want to be cared for at home at the end of
their lives.
• Most (80%) felt their loved one would want
spiritual support at the end of life.
• Most (80%) were aware of what type of
funeral their loved one wanted.
• Most (82%) had not discussed organ or body
donation.
Carers
• Most (74%) had considered a nursing home
admission in future, as the disease progresses.
• Half had either refused to take a loved one
home or considered an early nursing home
admission because of fear of managing their
loved ones symptoms.
• Half were confident they could manage end of
life care and half were not.
What Services Carers felt would be most useful to them
Percentage
Elder abuse service
OT/Physio/SLT
Muintir na Tire repair service
Active listening services
Geriatrician
Meals on wheels
Help lines
Psych of old age
Senior alert scheme
Private home care
Le Cairde/ASI
Genio crisis intervention
More information
The carers association
Home care packages
HSE respite
Alzheimers society
Day care centre
Genio home based respite
Home help
0
10
20
30
40
50
60
70
We asked South Tipp Healthcare
professionals (HCPs) for their views
on services around dying with
dementia, by questionnaire.
150 Healthcare professionals
35 22
Healthcare assistants
Registered nurses
87
Pre and post registration
doctors
Response rate was 96.7%. 5 missing fields.
We chose those places where people with dementia
and their carers are most likely to meet HCPs
GPs
District hospital
Public health
Doctors
Nursing home
HCA
Nurses
Psychiatry longterm care
HSE Longterm care
Acute hospital
0
10
20
30
40
50
60
70
Do you work with people with
dementia?
160
143
140
120
100
80
60
40
5
20
0
Yes
No
Response rate was 98.7%. 2 missing fields.
How long have you
been working with
people with
dementia?
How long have you
been working in
healthcare?
60
51
50
30
35
42
40
35
40
30
45
30
41
28
29
25
21
20
20
15
10
10
5
0
0
One to Six to ten Eleven to
five
twenty
More
than
twenty
Response rate was 98%. 3 missing fields.
One to Six to ten Eleven to
five
twenty
More
than
twenty
Response rate was 93.3%. 10 missing fields.
How much time do you spend working
with people with dementia?
95% OF RESPONDENTS WORKED WITH THOSE WITH DEMENTIA TO SOME
EXTENT IN THEIR PROFESSIONAL LIVES
30%
less than 30%
31-70%
54%
greater than 70%
16%
Response rate was 90.7%. 14 missing fields.
Most important factors in care of
the person dying with dementia
Percentage
Nutrition
Adequate staffing
Multidisciplinary team
Place of care
Health and safety
Personal care
Communication
Spiritual care
Family present
Dignity/privacy
Symptom control
0
10
20
30
40
50
60
70
80
What HCPs feel is important for
families
Percentage
Financial support
Environment
Privacy
Empathy
Ability to get involved /progress updates
Counselling
Services/equipment
Time with staff
Respite
Education and training
Other
0
10
20
30
40
50
60
Have you received training in
palliative care?
90
83
80
70
61
60
50
40
30
20
10
0
Yes
No
Response rate was 93.3%. 10 missing fields.
How much training have you
received in palliative care?
60
57
50
43
40
30
No training
27
One day or less
Two or more days
20
10
15
Certificate or diploma
Specialist training
1
0
No
One day or Two or Certificate Specialist
training
less
more days or diploma training
Response rate was 95.3%. 7 missing fields.
Are you satisfied with how
decisions around end of life
care are made?
120
96
100
80
60
40
20
27
9
9
0
Fully satisfied
Mostly satisfied Mostly not satisfied
Not satisfied
Response rate was 88%. 18missing fields.
How often would you discuss
dying with your patient?
Percentage
50
45
40
35
30
25
20
15
10
5
0
Always
Sometimes
Rarely
Never
How often would you discuss
dying with the family or carer?
Percentage
50
45
40
35
30
25
20
15
10
5
0
Always
Sometimes
Rarely
Never
Are decisions, made around
end of life care, consistent with
patients and family wishes?
3
2
46
Fully consistent
Mostly consistent
Mostly not consistent
Not consistent
86
Response rate was 91.3%. 13 missing fields.
Would specialist palliative care be of
benefit to those with distressing
physical and/or psychological
symptoms?
%
60
54
50
40
32
30
14
20
10
0
Necessary
Significant benefit
Minor benefit
Is a multidisciplinary approach to
patient care important at end of life?
140
120
100
80
60
40
20
0
Yes
No
Data not included today
• What factors are taken into consideration when
deciding appropriate care?
• Important palliative issues for the dying patient.
• Awareness of WHO guidelines.
• Aspects of care that need to improve.
• Tools used to assess need for advanced palliative
care.
• Awareness of the 3 level model of palliative care.
• Access to policies and guidelines.
People with dementia
Focus group
Analysis will be completed by
Summer
General themes
• Planning for the future did not address dementia
specifically but the diagnosis did trigger making a
will and having legal matters sorted out.
• There was concern for the carer and considerable
guilt about their burden.
• There was a refusal to contemplate end of life
matters.
• There was an absolute belief that their loved one
would make the right decisions about everything
when the time came and that whatever they
decided, didn’t really matter.
Next steps
• Complete the data analysis.
• Write a report.
• Share it with the consortium.
• Formulate a to do list based on what the
consortium views are.
Thank you.
www.southtipperarydementia.ie