A palliative approach to dementia care, which supports the patient and their family from diagnosis to the end of life across all care settings, is crucial to optimising quality of life for dementia patients. Read all about how general practitioners have a key role in supporting patients and their caregivers in every phase of the dementia journey.
DEMENTIA IN SINGAPORE
In Singapore, one in ten people above the age
of 60 suffers from dementia. This corresponds to
approximately 82,000 people in 2018, and this number
is projected to increase to 152,000 by 2030.a
This article highlights the palliative approach to
dementia care and emphasises early advance care
planning (ACP) to facilitate treatment decisions in the
later stages.
PROGNOSTICATION OF DEMENTIA
Prognostication guides conversations on ACP and
goals of care discussions, and facilitates referral to
hospice care.
A validated and commonly used prognostication
tool for Alzheimer’s disease (AD) dementia is the
Alzheimer’s Functional Assessment Staging Test (FAST) scaleb (Table 1) . This provides an overview of the disease course in AD, in which a patient who has
reached FAST stage 7a is likely to have a prognosis of
less than six to 12 months.
Table 1 Adapted from Medical Care Corporationb
How GPs Can Adopt a Palliative Approach to Dementia Care
1. Upon Diagnosis of Dementia
Breaking the diagnosis
At diagnosis, patients are faced with the prospect
of loss of identity, abilities and independence. Their
families are also confronted with the potential loss of
their relationship with the patient and the uncertainty
of future caregiving burden.
As such, a sensitive approach (e.g., utilising the
SPIKES communication model1 as in Case Vignette
A) to breaking bad news of the diagnosis of dementia
is helpful.
CASE VIGNETTE AThe GP, Dr A, diagnoses Mdm L with dementia. He sits alongside Mdm L and maintains eye contact with her. Asking open-ended questions He asks her open-ended questions about how she wants to receive information: "Would you like to hear everything that is going on, or just the big picture? Do you want other people around you when you are receiving information, or would you prefer to hear the news by yourself?” Mdm L says she would like to hear everything that is going on, with her son who is next to her. Dr A asks her what she thinks is causing the symptoms of forgetfulness and difficulty with cooking. Mdm L is silent. Breaking the diagnosis Dr A asks, “After hearing your story and examining you, I would like to talk to you about what is going on. Would that be OK?” Mdm L nods. Dr A says, “I’m afraid I have some difficult news to share.” He stops to look at Mdm L, who remains silent and looks expectantly at him. “I’m concerned that you have dementia.” Mdm L looks sad. Addressing concerns Dr A says, "I can see that this is making you sad. What is the most difficult part of this for you?” Mdm L says she is worried about being a burden to her son, as he has already been helping her more in the past year, despite being busy with his work and children. Dr A says, "I hear your worry about being a burden. This is something many patients worry about. But, what if instead of your son, it was you who were his caregiver – would you feel that it is a burden or an honour to care for someone you love?” Mdm L’s son adds, “Mom, you are not a burden. If I know how to help, it is better than now when I feel so helpless and worried about you.” Dr A then asks Mdm L if she is ready to discuss the treatment plan. |
2. In the Earlier Stages of Dementia
Symptom management and caregiver support
Treatment of dementia in the earlier stages is usually
focused on:
Pharmacological use of cholinesterase inhibitors
(e.g., donepezil, rivastigmine) and NMDA receptor
antagonists (e.g., memantine)
Consider stopping the agents if the patient is
unable to tolerate them due to side effects,
or if the patient demonstrates a greater-than-
expected decline after at least one
therapeutic trial (for at least six months, with
at least eight weeks of maximum / most
tolerated dose).
Consider stopping other drugs that may
exacerbate cognitive impairment (e.g.,
anticholinergic drugs).
If the patient has symptoms refractory to the
GP’s efforts, consider referral to a neurologist,
geriatrician or psychiatrist for shared care. In addition to optimising medical treatment, the
specialist can offer a multidisciplinary team
approach with the nursing and allied health
teams for swallowing, nutrition, physical and
occupational therapy assessments, as well as psychosocial and spiritual care. |
Advance care planning
While the patient still has mental capacity, ACP
(illustrated in Case Vignette B) including specific
discussions on dysphagia management would help
to ensure that subsequent medical care is consistent
with the patient’s preferences.
Patients are also advised to appoint a lasting power
of attorney (LPA).n
CASE VIGNETTE BAdvance care planning Dr A did ACP over time, pacing with Mdm L and her
son, and provided them with a ‘road map’ so they
understood about her current FAST staging, signs
to look out for that would suggest progression
to a more advanced stage, the pace of disease
progression, and where she was heading in terms
of her function relating to ADLs, cognition and communication. Dr A also kept Mdm L and her son informed on
the management options for dementia and the
symptoms that she was experiencing. Fulfilling the patient's wishes
Dr A ensured that the present and future medical
care decisions were aligned with their goals of
care, at times negotiating on behalf of Mdm L or
her son.
Towards the end when Mdm L had no mental capacity to make decisions on her medical care,
her son was grateful that he knew what she would
have wanted. She had told him she wanted to have her meals
orally, and that should she be reliant on others
for her toileting needs or unable to communicate
meaningfully through gestures, she would want
medical care to focus on her comfort rather than prolongation of life. |
3. In the Later Stages of Dementia
In severe dementia (from FAST stage 7),
communication difficulties and resistance to care
and feeding may become more prominent than
BPSD, with increased frequency of infections,
complications of immobility and malnutrition.
Physicians may have to decide on feeding
tube insertion, hospitalisation and intravenous medications – interventions that may cause
discomfort to the patient without bringing any
meaningful benefit.
If an ACP has not been established, discuss goals
and extent of care with the patient’s close family
members who have insight into the patient’s likely
care preferences.
Stopping non-essential medications
Stop cholinesterase inhibitors / memantine by tapering over two to three weeks when there is no
meaningful interaction between the patient and
others/family. If decline is observed temporally
to medication discontinuation, the drug can be gradually re-introduced.
Also consider stopping other medications that
are no longer beneficial when life expectancy is
very limited (e.g., vitamins, statins, antithrombotics,
bisphosphonates).
Managing pain
Assess for pain with a rating scale for patients who are unable to communicate, such as the Pain
Assessment in Advanced Dementia Scaleo.
The scale is also useful for caregivers to determine
if patients are experiencing discomfort – it teaches
that the patient can express discomfort though facial
expressions / body language such as laboured breathing, groaning or crying, looking tense,
restlessness, clenching fists, drawing up knees, or
pulling / pushing / striking out.
Treat the underlying cause of pain where possible.
Consider regular analgesia such as regular
paracetamol if pain is frequent, when the underlying
aetiology is unknown or irreversible.
Managing dysphagia and food refusal
Improve food intake by ensuring adequate fluids,
enhancing taste and liberalising diet based on the patient’s preferences. After addressing reversible dental and medical causes, food refusal may
characterise the end stage of dementia. The poor
appetite and associated weight loss may distress
the family.
Considerations for providing nutrition with a feeding
tube would include the following:
Aspiration pneumonia is the most common
cause of death in dementia.
Inserting a feeding tube is a medical intervention.
Feeding tubes do not eliminate the risk of aspiration (e.g., from saliva) and are not
associated with improvement in mortality.
Patients may reject feeding tubes and the
resultant agitation may require physical and
chemical restraints.
Compared to tube feeding, careful oral feeding
offers similar outcomes in aspiration pneumonia,
functional status, comfort and mortality rate.
For patients at high aspiration risk but who do
not refuse oral feeding, tasting food may be one
of the patient’s few remaining pleasures. Oral
feeding may also be a time for socialisation with
the family.
When oral intake is poor, families of patients
without a feeding tube may second guess their
decision. Be available to offer continued support.
If a feeding tube is inserted, establish clear goals
(e.g., to continue treating infections with oral
antibiotics and avoid hospitalisations, while the
patient is still alert) and regularly re-evaluate if
goals are being met.
End-of-life care
If the patient’s prognosis is less than one year,
consider a referral to hospice home care.p
The referral criteria include:
- Severe stage of dementia with increasing word-finding
difficulty (FAST stage 7) and one of the following:
- Pneumonia in the past one year
- Serum albumin < 35 g/l
- Feeding tube
- Suboptimally controlled symptoms
(e.g., pain)
The hospice home care team would visit patients
in their homes and provide caregivers with after-hours
support in the event of emergencies. Inpatient
hospice may be considered if patients cannot be
adequately managed at home.
In the event of demise, family members can
be referred to bereavement support services if
necessary.q
USEFUL LINKS
a. Let’s talk about Vascular Dementia. HealthHub. https://www.healthhub.sg/programmes/74/understanding-dementia
b. Functional Assessment Staging Test (FAST). Medical Care Corporation. https://www.mccare.com/pdf/fast.pdf
c. Dementia Resources for Caregivers. Agency for Integrated Care. https://www.aic.sg/body-mind/dementia
d. Dementia Resources to Support Caregivers. Agency for Integrated Care. https://www.aic.sg/resources/Documents/Brochures/Mental%20Health/Dementia%20Support%20and%20Resources%20listing.pdf
e. Your Guide to Building a Dementia-Friendly Singapore. Forget Us Not. https://forgetusnot.sg/assets/images/resources/downloads/LIEN_Dementia_Handbook.pdf
f. Dementia Singapore. https://dementia.org.sg/
g. Resources. Dementia-Friendly Singapore. https://www.dementiafriendly.sg/Resource
h. Learning About Dementia Care from Others. Agency for Integrated Care. https://www.aic.sg/body-mind/dementia-brochures
i. Managing Dementia and Behaviours of Concern. Agency for Integrated Care. https://www.aic.sg/body-mind/manage-dementia-behaviour
j. Caregiver’s Guide: Supporting Persons with Dementia who Wander. Agency for Integrated Care. https://www.aic.sg/resources/Documents/Brochures/Mental%20Health/Caregivers%20Guide%20for%20Persons%20with%20Dementia%20Who%20Wander%20(F).pdf
k. Rawtaer I (July 2021). How to Manage Behavioural and Psychological Symptoms of Dementia. Defining Med. https://www.singhealth.com.sg/news/defining-med/How-to-Manage-Behavioural-and-Psychological-Symptoms-of-Dementia
l. Support from Caregivers of Persons Living with Dementia. Agency for Integrated Care. https://www.aic.sg/body-mind/dementia-caregiversupport
m. Go Respite Pilot. Agency for Integrated Care. www.aic.sg/caregiving/go-respite-pilot
n. Office of the Public Guardian. Ministry of Social and Family Development. https://www.msf.gov.sg/opg
o. Pain Assessment in Advanced Dementia Scale (PAINAD). Dementia Pathways. http://dementiapathways.ie/_filecache/04a/ddd/98-painad.pdf
Palliative Care Services. Singapore Hospice Council. https://singaporehospice.org.sg/services/
q. Community Bereavement Service Providers. Singapore Hospice Council. https://singaporehospice.org.sg/community-bereavement-service-providers
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Creutzfeldt CJ, Kluger BM, Holloway RG, eds. Neuropalliative Care: A guide to improving the lives of patients and families affected by neurologic
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Dr Ang Kexin is a neurologist sub-specialising in supportive and palliative care. She wishes
to improve the reach of palliative care for patients with chronic neurological conditions
through empowering healthcare professionals involved in their care.
GPs who would like more information on the topic may contact Dr Ang at
[email protected].
Dr Yong Ming Hui is a Consultant neurologist from the Department of Neurology, National
Neuroscience Institute (Singapore General Hospital Campus).
Dr Goh Jia Jun is a Principal Resident Physician from the Department of Neurosurgery,
National Neuroscience Institute (Tan Tock Seng Hospital Campus).
GPs can call the SingHealth Duke-NUS Supportive & Palliative Care Centre for appointments at the following hotlines:
Singapore General Hospital: 6326 6060
Changi General Hospital: 6788 3003
Sengkang General Hospital 6930 6000
KK Women’s and Children’s Hospital: 6692 2984
National Cancer Centre Singapore 6436 8288
National Heart Centre Singapore 6704 2222
National Neuroscience Institute 6330 6363
