​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.

FUNCTIONAL ASSESSMENT STAGING TEST (FAST) SCALE
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 A

The 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).

  • Non-pharmacological measures

    • These include optimising cardiovascular risk factors, regular aerobic exercise, engaging the patient in cognitively-demanding leisure and social activities and a Mediterranean diet.

  • Treatment of behavioural and psychological symptoms of dementia (BPSD)

    • Extensive resources addressing the various BPSD have been made available online by organisations such as the Agency for Integrated Care and Dementia Singapore.c-j

    • Another helpful resource is an article in the July 2021 issue of Defining Med entitled ‘How to Manage Behavioural and Psychological Symptoms of Dementia’.k

  • Caregiver education and support

    • Caregivers may require continued clarification of their concerns, including those regarding the patient’s medication regimen, which should be simplified wherever possible.

    • Consider introducing caregivers to caregiver support groupsl, as well as referrals to nurses, physical therapists and occupational therapists for caregiver training, assistive aids and adaptive strategies in caregiving.

    • Where caregivers are not able to meet the patient’s care needs on their own or need respite, available care options include:

      • Day care or nursing home respite carem

      • Centre-based services (e.g., dementia day care)

      • Private hourly-rated caregivers (e.g., Jaga Me, Homage, Comfort Keeper, Active Global)

      • Home personal care, meals-on-wheels, and medical escort – home-based services which help with one’s ADLs, meal deliveries or escort/transport to medical appointments

WHEN GPs SHOULD REFER

​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 B

Advance 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

REFERENCES

  1. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, and Kudelka AP. SPIKES--A six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist. 2000, 5:302-311. Education in Palliative and End-of-Life Care (EPEC)-Neurology Curriculum. International Neuropalliative Care Society. https://www.inpcs.org/i4a/pages/index.cfm?pageid=3324

  2. Education in Palliative and End-of-Life Care (EPEC)-Neurology Curriculum. International Neuropalliative Care Society. https://www.inpcs.org/i4a/pages/index.cfm?pageid=3324

  3. Creutzfeldt CJ, Kluger BM, Holloway RG, eds. Neuropalliative Care: A guide to improving the lives of patients and families affected by neurologic disease. Cham, Switzerland: Springer; 2019.

  4. deLima Thomas J, Sanchez-Reilly S, Bernacki R, O’Neill L, Morrison LJ, Kapo J, Periyakoil VS, Carey EC. Advance care planning in cognitively impaired older adults. J Am Geriatr Soc. 2018 Aug;66(8):1469-1474. doi: 10.1111/jgs.15471

  5. Hugo J, Ganguli M. Dementia and cognitive impairment: Epidemiology, diagnosis, and treatment. Clin Geriatr Med. 2014 Aug;30(3):421-42. doi:10.1016/j.cger.2014.04.001

  6. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Jünger S, Gove D, Firth P, Koopmans RT, Volicer L; European Association for Palliative Care (EAPC). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014 Mar;28(3):197-209. doi:10.1177/0269216313493685

  7. Merel SE, DeMers S, Vig E. Palliative care in advanced dementia. Clin Geriatr Med 2014; 30:469-92.

  8. Stewart JT, Schultz SK. Palliative care for dementia. Psychiatr Clin North Am 2018; 41:141-51.

 

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 ang.kexin@singhealth.com.sg.

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