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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.
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.
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
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.
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
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:
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.
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:
Such experience of loss and grief is especially prominent:
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:
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
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 6060Changi General Hospital: 6788 3003Sengkang General Hospital: 6930 6000National Neuroscience Institute: 6330 6363
HEAD AND NECK;Brain