The Needs of Informal Caregivers - DementiaHub.SG

The Needs of Informal Caregivers

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When working with informal caregivers (family members, friends, or foreign domestic workers) of persons living with dementia, it is important to first understand their needs, worries, and struggles, before working with them to develop and implement an effective care and support plan.

A research conducted locally in 2013 explored the experiences and challenges informal caregivers of persons living with dementia face. Through the study, they identified the following unmet needs of these caregivers:1

Need for Emotional & Social Support

Perceived Unmet Needs

Informal caregivers experience many physical and mental stressors from daily involvement in caring for their loved ones living with dementia. These physical and mental stressors include:

●        Physical strain as they struggle between their own health issues and providing physical care (e.g. assisting with activities of daily living)

●        A sense of emotional burden and guilt when they feel they are unable to provide optimal care for their loved ones

●        Having their loved ones be in denial of their diagnosis

●        Managing their loved ones’ behaviour changes, which include instances where these behaviours cause conflicts with neighbours and embarrassments in public

●        Dealing with uncertainty, due to the progressive nature of dementia

●        Family conflicts, which may arise from unequal care participation and/or contribution towards financial expenses, lack of family support, inability to reach healthcare decisions amicably, etc.


These stressors often lead to several negative emotions in caregivers, such as anxiety, worry, depression, guilt, frustration and anger.

Support Required

Hence, informal caregivers may require a lot of emotional and social support from various sources, which include:

 

●        Support from family to help and balance the provision of care

●        Support from friends to maintain emotional stability

●        Support from neighbours and community

●  May help to reduce any misunderstandings and embarrassments.

●  They can also step in to assist when the person living with dementia goes missing.

●        Professional help (e.g. counselling, therapy, etc.) to help with any negative emotions they may experience

●        Assistance in providing day-to-day physical care to alleviate physical strain

●        Alternative care arrangements

 

Learn more about the negative emotions that informal caregivers experience and the resources they can seek support from, under the topic Support for Myself

Need for information

Perceived Unmet Needs

Informal caregivers need information on:

●        Recognising the early signs and symptoms of dementia, and differentiating them from the normal ageing process

●        Recognising when dementia has progressed and knowing what to expect, to be better prepared to care for their loved ones living with dementia at home

●        The different types of treatments available and their effects

●        Strategies to manage behaviour changes

●        Managing unexpected, emergency situations at home

●        Services for their loved ones living with dementia (e.g. day care centres, respite care services, home care services, etc.)

●        Services for themselves, such as support groups, trainings for themselves and their domestic helpers, etc.

Support Required

Resources and information are available on DementiaHub.SG.

We suggest that you navigate and familiarise yourself with the pages within the portal. This will help to facilitate the process when guiding the caregivers you work with, in accessing the necessary information required to better care for their loved ones living with dementia and themselves.

Need for Support on Finances

Perceived Unmet Needs

Caring for loved ones with dementia at home may incur high costs of living from things like:

●        Medications and medical appointments

●        Day care, home care and respite care services

●        Emergency care situations and hospitalizations

●        Transportation Costs

●        Domestic Helpers’ Salary

●        Assistive devices and daily consumables for sanitation (e.g. diapers)

Furthermore, due to the high costs of long-term care facilities, some may have to leave their jobs in order to be full-time caregivers for their loved ones. This results in an additional loss of income as well.

Support Required

Hence, these informal caregivers need financial support in terms of:

●        Support from relatives to share the contribution of financial expenses

●        Support and understanding from employers when they have to take time off work to accompany their loved ones for medical appointments

●        Legal assistance: Some persons living with dementia and their caregivers may not have made proper legal arrangements. The cost of legal services increases while seeking assistance for those with advanced stages of dementia, and the administrative procedures can be a hassle and  make things more difficult for caregivers.

●        Financial assistance and subsidies, and financially-affordable services for their loved ones and themselves

Find out about the Financial and Legal Support informal caregivers can apply for.

Need for Accessible & Appropriate Facilities for Persons Living With Dementia

Perceived Unmet Needs

Informal caregivers are concerned about the adequacy, accessibility and affordability of the services for their loved ones living with dementia. These concerns include:

●        Lack of dementia-specific care settings, and some non-dementia-specific care centres may discharge persons living with dementia who exhibit disruptive behaviours

●        Lack of day care services

●        Lack of affordable short-term respite care and night respite care services which allow them to recharge before connecting with their loved ones again

●        Lack of meaningful activities in nursing homes and day care services

●        Gloomy-looking environment of the facilities

●        Lack of access to care professionals to discuss matters related to their loved ones

●        Lack of appropriate skills by care professionals to care for persons living with dementia

●        Having to accompany their loved ones to different centres on separate days for various checkups

Support Required

Hence, these informal caregivers hope for:

●        An adequate number of facilities and services which they can utilize (e.g. nursing homes, day care centres, home care services, and respite care services, etc.)

●        Some day care centres to have longer operating hours

●        Dementia-friendly environment in nursing homes and day care centres

●        Easily accessible facilities (e.g. within vicinity of their residence or workplace, available transportation options)

●  Helps to reduce concerns and costs of transportation

●        Evening or weekend clinics and services to avoid taking leave from work for medical appointments

References

  1. Vaingankar, J. A., Subramaniam, M., Picco, L., Eng, G. K., Shafie, S., Sambasivam, R., Zhang, Y. J., Sagayadevan, V., & Chong, S. A. (2013). Perceived unmet needs of informal caregivers of people with dementia in Singapore. International Psychogeriatrics, 25(10), 1605-1619. https://doi.org/10.1017/S1041610213001051
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