Palliative Care for Alzheimer Disease

Aging Research Center Universitas Diponegoro
& Alzheimer Indonesia Chapter Semarang
Palliative Care
for Alzheimer Disease
Health Webinar
October 10th, 2020
Ika Syamsul Huda MZ

ILLNESS TRAJECTORY
Department of Health, Western Australia. Palliative Care Model of
Care. Perth: WA Cancer & Palliative Care Network, Department of
Health, Western Australian; 2008.

Aloysius Alzheimer
14 June 1864 – 19 December
1915
Case of “presenile dementia”

There is no cure for the disease,
and patients will need more care and support as time goes on.
https://getpalliativecare.org/whatis/disease-types/alzheimers-disease-palliative-care/
Facing Alzheimer’s Disease is
stressful for both the
patient and family
members.

Alzheimer’s
changes the entire brain.
https://web.archive.org/web/20201004211719/https://barbadosunderground.files.wordpress.com/201
2/09/biochemistryofalzheimers.pdf

http://www.scientificanimations.com/wp-content/uploads/2017/09/SAG_Alzheimers_170918_03.jpg

Alzheimer's Disease (AD) Continuum
https://web.archive.org/web/20200922193312/https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

The earliest symptoms are
memory lapses.
They get worse over time
interfere with daily life.
They may become anxious, irritable or depressed.
Many people become withdrawn
and lose interest in activities
and hobbies.
https://web.archive.org/web/20201004072012/https://www.alzheimers.org.uk/sites/default/files/pdf/what_is_alzheimers_disease.pdf

As Alzheimer’s progresses,
problems with
memory loss,
communication,
reasoning
and orientation
https://web.archive.org/web/20201004072012/https://www.alzheimers.org.uk/sites/default/files/pdf/what_is_alzheimers_disease.pdf
delusions
hallucinations
restlessness
reacting aggressively

☛ Bed-bound
☛ Blood clots
☛ Skin infections
☛ Sepsis
☛ Difficult to eat and
drink
☛ Lung infection
(pneumonia)
Contributing cause of death
They may have
difficulties eating
or walking without
help,
and become
increasingly frail.
https://web.archive.org/web/20201004072012/https://w
ww.alzheimers.org.uk/sites/default/files/pdf/what_is_alzh
eimers_disease.pdf

Pressure sores
Pneumonia

On average,
people with Alzheimer’s disease
live for eight to ten years
after the first symptoms.

Alzheimer’s is
a disease for which
there is no effective treatment
whatsoever.
To be clear,
there is no pharmaceutical agent,
no magic pill that a doctor can
prescribe
that will have any significant
effect
on the progressive downhill
course of
this disease.
—David Perlmutter
https://doi.org/10.1016/j.cger.2018.06.006

Palliative care
can be started any time after
a diagnosis of Alzheimer’s
Disease,
but the earlier the better because
a palliative care team can work
as part of support structure from
the very beginning.
— https://getpalliativecare.org/whatis/disease-types/alzheimers-disease-palliative-care/

http://www.who.int/cancer/palliative/definition/en/
WHO Definition of Palliative Care
Palliative care is an approach that improves
the quality of life of patients and their families facing
the problem associated with life-threatening illness,
through the prevention and relief of suffering
by means of early identification and impeccable
assessment and treatment of pain and other
problems, physical, psychosocial and spiritual.

A New Consensus-Based Definition:
Palliative Care is the active holistic care of individuals across all ages
with SHS (serious health-related suffering) because of severe illness and
especially of those near the end of life.
It aims to improve the quality of life of patients, their families, and
their caregivers.
Suffering is health related when it is associated with illness or injury of any kind.
Health-related suffering is serious when it cannot be relieved without medical intervention
and when it compromises physical, social, spiritual, and/or emotional functioning.
Severe illness is a condition that carries a high risk of mortality, negatively impacts quality of
life and daily function, and/or is burdensome in symptoms, treatments, or caregiver stress.
https://www.jpsmjournal.com/article/S0885-3924(20)30247-5/fulltext

Palliative care specialists treat people living with many disease types and chronic illnesses.
These include
☛ cancer,
☛ cardiac disease such as congestive heart failure (CHF),
☛ chronic obstructive pulmonary disease (COPD),
☛ kidney failure,
☛ Alzheimer’s,
☛ Parkinson’s,
☛ Amyotrophic Lateral Sclerosis (ALS)
☛ and many more.
☛ Palliative care is also essential for patients with COVID-19.
https://getpalliativecare.org/whatis/disease-types/

The holistic approach looks at problems in four groups:
1. ■ Physical – symptoms (complaints), eg pain, cough,
tiredness, fever
2. ■ Psychological – worries, fears, sadness, anger
3. ■ Social – needs of the family, issues of food, work, housing
and relationships
4. ■ Spiritual – questions of the meaning of life and death, the
need to be at peace.
https://thewhpca.org/resources/palliative-care-toolkit

PALLIATIVE
Palliare (Bahasa Latin)
= to cloak, cover
jubah, mantel
dr. Balfour Mount
Born 14 April 1939
Urological surgeon
Father of Canada's
palliative care
movement

Palliative care (PC) aims to relieve suffering
for persons affected by serious illness by
addressing
medical, psychosocial, and spiritual needs.

Palliative care can focus on:
 controlling symptoms
 independence
 emotional, social and spiritual wellbeing
 planning for the future
 caring for patient's family and carers
https://www.health.qld.gov.au/news-events/news/what-is-palliative-care-Queensland

1. Pain
2. Anorexia
3. Nausea and vomiting
4. Constipation
5. Diarrhoea
6. Dyspnea
7. Fatigue
8. Delirium
9. Depression
10. Anxiety
11. Respiratory tract secretions
11 SYMPTOMS
https://web.archive.org/web/20200907151304/https://www.who.int/selection_medicines/committees
/expert/19/applications/PalliativeCare_8_A_R.pdf
priority in palliative care

• Psychological distress has been shown to have
a significant impact on quality of life, degree
of pain, physical functioning and families.
• Appropriate psychological intervention is
required but are often not recognised.
https://web.archive.org/web/20200808031349/https://www.nwcscnsenate.nhs.uk/files/1714/1509/5925/Psychological_support_-
_Jan_2014.pdf

Symptoms:
☛ Pain
☛ Nausea/vomiting,
☛ anorexia,
☛ itch/irritation,
☛ constipation/diarrhoea,
☛ wound/ulcer,
☛ dysphagia,
☛ incontinence,
☛ weakness/fatigue,
☛ oedema,
☛ dyspnoea,
☛ confusion/delirium.
Psychological/Spiritual:
☛ Anxiety/fear,
☛ anger,
☛ unrealistic goals,
☛ agitation,
☛ request to die,
☛ depression/sadness,
☛ confusion.
Family/Carer:
☛ Denial,
☛ care giver fatigue,
☛ unrealistic goals,
☛ anger,
☛ difficult communication
☛ sensory impairment,
☛ financial,
☛ family/carer conflict,
☛ legal,
☛ family/carer anxiety,
☛ accommodation,
☛ cultural.
https://apps.hnehealth.nsw.gov.au/hapcn/assets/resource/PC%20Clinical%20Assessment%20Tools.pdf

PALLIATIVE CARE
https://pubmed.ncbi.nlm.nih.gov/26598947/

INFORMATION
BREAKING BAD NEWS
FAMILY SUPPORT
ADVANCED CARE PLANNING

SUBSTITUTE DECISION MAKER
A Substitute Decision Maker
is appointed according to the following heirarchy:
☛ Power of Attorney
☛ Spouse (living together in a married or common-law relationship)
☛ Parent or child
☛ Siblings
☛ Other relatives
https://www.lhsc.on.ca/critical-care-trauma-centre/what-is-a-substitute-decision-maker

PALLIATIVE CARE TEAM
• Physicians
• Nurses
• Chaplains
• Social Workers
• Pharmacists
• Volunteers
• Psychologist
• …
Interdiscipline
Collaboration
Coordination
Delivered by an
interdisciplinary
team, palliative care
adds an extra layer of
support by
addressing the
physical, emotional,
psychosocial and
spiritual concerns
associated with
serious and chronic
conditions.
https://csupalliativecare.instructure.com/cours
es/1005/pages/what-is-palliative-
care?module_item_id=52419

The team helps manage symptoms,
but members of the team also focus on conversations
about your goals, concerns and treatment options.
The team helps to discuss what is important to,
how and where patient want to be cared for
and what level of care patient would want in the future.
— https://getpalliativecare.org/whatis/disease-types/alzheimers-disease-palliative-care/

THE ROLE OF ALLIED HEALTH PROFESSIONALS
• ☛ providing support to manage physical symptoms including support
related to medication, nutrition, communication, and mobility;
• ☛ assisting people with a life-limiting illness to maintain function and
independence;
• ☛ providing a wide range of psychological support, social support, pastoral
care, and bereavement support;
• ☛ providing therapies that focus on improving the quality of life that
support people, families, and carers to achieve their goals; and
• ☛ sharing information about disease progression and providing education
for people living with a life limiting illness, their families, and carers.
https://web.archive.org/web/20201007004923/https://www.caresearch.com.au/caresearch/Portals/0/Engagement-Project/Allied-health-in-Australia-and-its-role-in-palliative-care.pdf

Counsellor,
Psychologist
Managing emotional
response to diagnosis
and treatment

Care planning and regular review
 Food and drinks
• Assisted hydration or nutrition: consider the benefits and risks
and review plan regularly.
 Medication:
• stop any treatments not consistent with the agreed goals of care
• continue medications consistent with goals of care
 Make a clear record of any interventions that are not appropriate.
 Consider emotional, spiritual, religious, cultural, legal and family
needs
 Bereavement: identify those at increased risk of complicated grief
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/Care-in-the-Last-Days-of-Life.aspx

Ethical Principles
 Autonomy:
Making one’s own decision
 Beneficence:
Intending to do good
 Nonmaleficence:
Intending to do no harm
 Justice:
Providing equal access
Dignity - the patient and the
persons treating the patient
have the right to dignity
Truthfulness and honesty - the
concept of informed consent
and truth telling
All these together constitute
the six values of medical ethics.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902121/

When Death Nears:
• Sleeping
• Loss of Interest in Food and Fluids
• Coolness
• Changes in Skin Color
• Rattling Sounds in the Lungs and Throat
• Bladder and Bowel Changes
• Disorientation and Restlessness
• Surge of Energy
• Breathing Pattern Changes

Unique problems in the care of the
patient with dementia
at the end of life may be related
to refractory delirium (confusion)
and cachexia (failure to maintain
weight).
https://www.geriatric.theclinics.com/article/S0749-0690(19)30115-6/fulltext

WITHHOLD & WITHDRAW

DNR
DNI
Do-not-resuscitate
Do-not-intubate
making early DNR decisions or other limitations in treatment
before fully understanding the prognosis

KHUSNUL KHATIMAH
Principles of a good death
1. · To know when death is coming, and to understand what can be
expected
2. · To be able to retain control of what happens
3. · To be afforded dignity and privacy
4. · To have control over pain relief and other symptom control
5. · To have choice and control over where death occurs (at home or
elsewhere)
6. · To have access to information and expertise of whatever kind is necessary
7. · To have access to any spiritual or emotional support required
8. · To have access to hospice care in any location, not only in hospital
9. · To have control over who is present and who shares the end
10. · To be able to issue advance directives which ensure wishes are respected
11. · To have time to say goodbye, and control over other aspects of timing
12. · To be able to leave when it is time to go, and not to have life prolonged
pointlessly
https://www.bmj.com/content/320/7228/129

Blog:
https://palliativecareindonesia.blogspot.com/p/
alzheimers-disease.html
Resources:
• https://spcare.bmj.com
• https://bmcpalliatcare.biomedcentral.com
• https://journals.sagepub.com
• https://pubmed.ncbi.nlm.nih.gov
• https://www.geriatric.theclinics.com
Download Presentation:
https://drive.google.com/file/d/1kRchhC55nSWXgmToTW_K4J
MRYSCkYG1O/view?usp=sharing

https://www.apa.org/pubs/journals/releases/amp-a0036735.pdf

DEKLARASI PERDOPIN
(Perhimpunan Dokter Paliatif Indonesia)
Surabaya, 22 Februari 2014

http://www.thewhpca.org

Palliative Care for Alzheimer Disease

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