​Discussion on dementia caregiving has mostly centred around the stress experienced by caregivers and the interventions to cope with it. Feelings of loss and grief which also impact the caregiver’s well-being are often unaddressed. Find out how GPs, due to their long-standing relationship with their patients, are best placed to help family caregivers address this facet.

INTRODUCTION

Dementia is a debilitating condition that causes chronic and progressive decline in cognitive function, to the extent that the cognitive decline interferes with independence in daily activities.

The natural trajectory of dementia often involves a gradual decline of cognitive functions over time so that the persons with dementia (PWD) are increasingly dependent on their caregivers to perform their activities of daily living, with some exhibiting behavioural problems such as agitation, restlessness and depression.

Determinants of Caregiver Depression

Family members of PWD often find themselves in the caregiving role following the diagnosis and progression of the disease, which for many is an abrupt and unexpected experience.

Frequently, this caregiving experience involves juggling between providing daily supervision of the PWD and the family caregivers’ other commitments, such as work and family, which can take an emotional and physical toll on the caregivers.

Globally, 1 in 3 family caregivers were shown to have depression, and this figure is consistently seen even in the local setting. One study in Singapore found that close to 1 in 2 family caregivers may have depression.1

 

Determinants of caregiver depression - The SingHealth Duke-NUS Memory & Cognitive Disorder Centre

1. PHYSICAL CARE DEMANDS

Many of the challenges in dementia caregiving involve supporting the physical dependence of the PWD as they lose the ability to care for themselves with progressive cognitive decline.

Some of the care challenges include managing their meals, medications and personal hygiene, as well as the taking over of more complex routines such as handling the finances, grocery shopping, doctors’ appointments and major healthcare decisions.

2. BEHAVIOURAL PROBLEMS

Not uncommonly, caregivers also contend with behaviour difficulties of the PWD, as there can be increasing mood or agitation symptoms often related to disease changes in the brain, accentuation of underlying personalities as well as suboptimal social environments.2

3. CAREGIVER COMPETENCY

Faced with increasing difficulties in care, family members may begin to notice the progressive cognitive decline and seek further help from healthcare services, which is when the diagnosis of dementia is made.

Following the formal diagnosis of dementia of the PWD, family members can then tap onto additional resources to support their caregiving experience, which may include access to:

  • Social services (such as dementia day care and caregiver training programmes)
  • Financial assistance (such as the Home Caregiving Grant and Pioneer Generation Disability Assistance Scheme)
  • Medication prescriptions (such as cognitive enhancers to maintain PWD’s cognitive function, and infrequently, the use of psychiatric medications to manage very challenging behaviours in the PWD)3,4

Family caregivers of PWD can benefit from training workshops and support groups which are routinely organised by the Alzheimer’s Disease Association of Singapore (ADA). Further details are available on the ADA website at  ww.alz.org.sg/csg or through ADA’s Dementia Helpline at 6377 0700.

4. LOSS AND GRIEF

Given the overwhelming difficulties in dementia caregiving, it is understandable how the traditional discussion on dementia caregiving has centred around the stressful experience of caregivers as well as the various interventions that aim to improve the coping of caregivers.

Inasmuch as this is true, there are also other critical experiences of family caregivers which are often less talked about.
In particular, the loss and grief experience of family caregivers is one that is increasingly recognised in recent literature, given that family members experience multiple losses within the context of caregiving.3-6

These losses include the:

  1. Anticipation of future losses related to the physical death of the PWD
  2. Ambiguous loss of the PWD who, despite being physically present, becomes emotionally disconnected from the caregiver

Such experience of loss and grief is especially prominent:

  • Among spousal caregivers (related to the loss of prior emotional closeness with the PWD)
  • Among caregivers who have many difficulties in daily care (with the care difficulties serving as ongoing reminders of the present reality of ambiguous loss)
  • When the PWD are at a younger age and more severe stage of disease (possibly representing the loss of hopes and dreams that had been envisioned in the relationship with the PWD)7

​HOW HEALTHCARE PROFESSIONALS CAN OFFER SUPPORT

The experience of loss and grief, comprising a constellation of conflicting emotions such as sadness, anger, guilt, fear, worry and helplessness, can often be rather unpleasant.

It is pertinent to note that these are normal reactions to real losses experienced by family caregivers and are no different from the average person's reactions to the loss of loved ones through the typical context of death.

As such, it would often be sufficient for healthcare professionals to:

  • Assure family caregivers that these are not abnormal experiences
  • Encourage them to involve other family members in the grieving process
  • Facilitate the family caregivers’ search of new ways to remain connected to the PWD (as a practical way to live with the losses), such as through therapeutic touch, humour, life review, spiritual practices and celebrations5,6

CONCLUSION

All in all, dementia caregiving, from the lens of family members, can be fraught with challenges and conflicting emotions.

Notwithstanding these, if the caregivers can navigate through these difficulties with the support of family, society and available care services, this could possibly turn out to be a unique experience that provides a different perspective on life. It is also a window of opportunity for family caregivers to cherish their remaining moments with the PWD.

In other words, while the whole caregiving experience may appear daunting, it is not unimaginable that we can defy the typical negative connotation associated with dementia caregiving, and turn this experience into a positive journey of personal growth and gains in relationships and spirituality.8

REFERENCES

  1. Ying J, Yap P, Gandhi M, Liew TM. Validity and Utility of the Center for Epidemiological Studies Depression Scale for Detecting Depression in Family Caregivers of Persons with Dementia. Dement Geriatr Cogn Disord. 2019;47(4-6):323-334.
  2. Kitwood TM. Dementia Reconsidered: The Person Comes First. Open University Press; 1997.
  3. Ying J, Yap P, Gandhi M, Liew TM. Iterating a framework for the prevention of caregiver depression in dementia: a multi-method approach. Int Psychogeriatr. 2018;30(8):1119-1130.
  4. Liew TM, Lee CS. Reappraising the Efficacy and Acceptability of Multicomponent Interventions for Caregiver Depression in Dementia: The Utility of Network Meta-Analysis. Gerontologist. 2019;59(4):e380-e392.
  5. Liew TM, Tai BC, Wee SL, Koh GC, Yap P. The Longitudinal Effects of Caregiver Grief in Dementia and the Modifying Effects of Social Services: A Prospective Cohort Study. J Am Geriatr Soc. 2020;68(10):2348-2353.
  6. Liew TM, Tai BC, Yap P, Koh GC. Comparing the Effects of Grief and Burden on Caregiver Depression in Dementia Caregiving: A Longitudinal Path Analysis over 2.5 Years. J Am Med Dir Assoc. 2019;20(8):977-983 e974.
  7. Liew TM, Tai BC, Yap P, Koh GC. Contrasting the risk factors of grief and burden in caregivers of persons with dementia: Multivariate analysis. Int J Geriatr Psychiatry. 2019;34(2):258-264.
  8. Liew TM, Luo N, Ng WY, Chionh HL, Goh J, Yap P. Predicting gains in dementia caregiving. Dement Geriatr Cogn Disord. 2010;29(2):115-122.


Dr Liew Tau Ming is a Consultant Geriatric Psychiatrist at Singapore General Hospital. He also holds a PhD in Public Health, and is an Adjunct Assistant Professor at the Saw Swee Hock School of Public Health, National University of Singapore. Dr Liew has a keen interest in the areas of dementia, geriatric mental health and health services research, and has published widely in reputable journals in these areas.

 

GPs can call the SingHealth Duke-NUS Memory & Cognitive Disorder Centre for appointments at the following hotlines:
Singapore General Hospital: 6326 6060
Changi General Hospital: 6788 3003
Sengkang General Hospital: 6930 6000
National Neuroscience Institute: 6330 6363