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5 Steps to Living Well with Dementia
in South Tipperary Genio/HSE funded project
www.southtipperarydementia.ie
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 Alzheimers 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
South Tipperary received joint funding by Atlantic Philanthropies and the HSE through the Genio Trust.
Asked to form a consortium. People with dementia, family carers, the
Alzheimer’s Society, the Carer’s Association, Muintir na Tire, South Tipperary Community & Voluntary Forum, a G.P. and HSE staff.
Background
• We wanted to transform the life experience of people with
dementia and their families in South Tipperary. • We wanted to increase public awareness, dispel myths, reduce
stigma and encourage people to come forward earlier for diagnosis and treatment.
• We wanted 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 wanted to transform that perception with information and support.
• But most of all we wanted to provide flexible person-centred care to allow people to continue living at home for as long as is possible.
Aims
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 logo – lapel pin bearing the project logo to promote dementia
awareness. – media campaign involving local radio, Tipp FM , the
Irish Times, Today with Sean O Rourke, RTE, UTV Ireland News
– Joint Oireachtas Committee on Health and Children – Website and facebook – Awareness training about dementia is being
delivered for professionals, dementia support workers and family carers Community Connector
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 , individually and in groups.
• We have established a single point of contact for the project and a new Clinical Nurse Specialist in Dementia post in the community.
Step 3 Progressive Dementia
• A unique Dementia Support Worker Initiative .
• Individualised, regular support, based on need, crisis intervention, one-off day off.
Delivered by our Dementia Support Workers (DSW) .
• We pay car insurance for the DSW.
Step 4 Advanced Dementia
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 and for professionals
• We have sourced a large range of products, Assistive Technologies (A.T.) and telecare.
• 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 and taken home on loan.
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.
The process...
We went to the consortium and set up a subgroup, who made a plan, which 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
Questionnaires
We got responses from 56 carers, 150 healthcare professionals and found the questionnaire format unsuitable for people with dementia.
Focus groups • 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 has been analysed by LIT.
Hotel Minella
What was found
An exclusive preview!
0
5
10
15
20
25
30
35
Happy tocare
Pressurisedinto carer
role
Benefitsoutweighed
thesacrifices
Exhausting Advocacychallenging
Feelingalone
Worryabout end
of life
How it feels to be a carer of someone with dementia in South
Tipperary.
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. – 10% were caring for more than 10 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 from hospital 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
0 10 20 30 40 50 60 70
Home helpGenio home based respite
Day care centreAlzheimers society day care
HSE respiteHome care packages
The carers associationMore information
Genio crisis interventionLe Cairde/ASI
Private home careSenior alert scheme
Psych of old ageHelp lines
Meals on wheelsGeriatrician
Active listening servicesMuintir na Tire repair service
OT/Physio/SLTElder abuse service
Percentage
We asked South Tipp Healthcare professionals (HCPs) for their views
on services around dying with dementia, by questionnaire.
22
87
35
150 Healthcare professionals
Healthcare assistants
Registered nurses
Pre and post registrationdoctors
Response rate was 96.7%.
Do you work with people with dementia?
143
5 0
20
40
60
80
100
120
140
160
Yes No
Response rate was 98.7%.
How long have you been working in healthcare?
21
30 35
51
0
10
20
30
40
50
60
One tofive
Six to ten Eleven totwenty
Morethan
twenty
Response rate was 98%.
How long have you been working with
people with dementia?
28
42 41
29
0
5
10
15
20
25
30
35
40
45
One tofive
Six to ten Eleven totwenty
Morethan
twenty
Response rate was 93.3%.
How much time do you spend working with people with dementia?
54%
16%
30%
less than 30%
31-70%
greater than 70%
95% OF RESPONDENTS WORKED WITH THOSE WITH DEMENTIA TO SOME EXTENT IN THEIR PROFESSIONAL LIVES
Response rate was 90.7%.
Most important factors in care of the person dying with dementia
0 10 20 30 40 50 60 70 80
Symptom control
Dignity/privacy
Family present
Spiritual care
Communication
Personal care
Health and safety
Place of care
Multidisciplinary team
Adequate staffing
Nutrition
Percentage
What HCPs feel is important for families
0 10 20 30 40 50 60
Other
Education and training
Respite
Time with staff
Services/equipment
Counselling
Ability to get involved /progress updates
Empathy
Privacy
Environment
Financial support
Percentage
Have you received training in palliative care?
83
61
0
10
20
30
40
50
60
70
80
90
Yes No
Response rate was 93.3%.
How much training have you received in palliative care?
57
27
43
15
1 0
10
20
30
40
50
60
Notraining
One day orless
Two ormore days
Certificateor diploma
Specialisttraining
No training
One day or less
Two or more days
Certificate or diploma
Specialist training
Response rate was 95.3%.
Are you satisfied with how decisions around end of life
care are made?
9
96
27
9
Fully satisfied Mostly satisfied Mostly not satisfied Not satisfied
0
20
40
60
80
100
120
Response rate was 88%.
How often would you discuss dying with your patient?
0
5
10
15
20
25
30
35
40
45
50
Always Sometimes Rarely Never
Percentage
How often would you discuss dying with the family or carer?
0
5
10
15
20
25
30
35
40
45
50
Always Sometimes Rarely Never
Percentage
Are decisions, made around end of life care, consistent with
patients and family wishes?
46
86
3 2
Fully consistent
Mostly consistent
Mostly not consistent
Not consistent
Response rate was 91.3%.
Would specialist palliative care be of benefit to those with distressing
physical and/or psychological symptoms?
54
32
14
0
10
20
30
40
50
60
Necessary Significant benefit Minor benefit
%
Is a multidisciplinary approach to patient care important at end of life?
0
20
40
60
80
100
120
140
Yes No
Focus Groups PWD
• In planning for their future they 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 they trusted their loved
one would make the right decisions about everything when the time came and that whatever they decided, it didn’t really matter.
Focus Groups - Carers
• Not all information is needed at the beginning.
• The right professional is needed at the right time.
• An integrated approach to the provision of information and care about end of life is needed.
• Services need to be flexible and responsive.
• Community based palliative care for dementia must be developed.
Thank you.
