Opinion: over 60,000 people are providing informal care to people with dementia in Ireland living in the community and formal supports are required to assist them in their role
People are living longer in Ireland, which is to be celebrated. But with longer life expectancy comes an older population which brings health problems and a greater dependence on informal carers. While Ireland has a relatively well-developed health and social care system for older people, informal care provided mainly by families is a very important source of care, particularly for those who are living at home in the community.
Informal care is defined as the unpaid support that many people around the country provide to disabled or elderly family, friends and neighbours. It's provided in all care settings, but it is the key to many dependent older people remaining at home for longer than might otherwise be expected. The economic cost of dementia in Ireland is estimated to be approximately €2 billion per year, half of which is attributable to informal care, and a recent report estimated that over 60,000 people are providing informal care to people with dementia in Ireland living in the community.
In economics, there are two methods used to measure the value of informal care: the opportunity cost method and the replacement cost method. The opportunity cost method places a value on the time the individual spends providing unpaid care relative to what they could have earned in paid employment elsewhere if they were not providing care. It can also put a monetary value on leisure time foregone as a result of caring.
The replacement cost method measures informal care using the equivalent market price of having to pay an alternative person to provide the care. In Ireland this is typically taken at the market wage of a healthcare assistant. Arguably, there are difficulties with both methods but, as our pool of potential informal carers decline, the replacement cost methods increasingly resembles reality.
Many carers providing care for people with dementia don’t think of themselves as informal carers. Many identify as a mother or father' husband, wife or life partner; son or daughter; niece or nephew; friend or neighbour. Informal carers provide care for many reasons. Sometimes, care is provided out of necessity. Mostly, it is provided with love and a strong sense of duty and responsibility. However, regardless of how carers self-identify or the reasons why people care, it is important they are supported in their role by the state.
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RTÉ Prime Time special report from December 2017 on the country's carers
While most carers gain satisfaction from caring for someone close to them, the job can be stressful. Carer burden is a measure of the physical and emotional burden felt by carers which can have real health implications resulting from increased levels of stress. The impact of carer burden goes beyond health impacts, with additional implications from a financial perspective. The implications of carer burden have the potential, therefore, to be substantial for carers, families the taxpayer and society.
Many studies have highlighted the importance of formal supports for informal carers to assist them in the caring role. Respite care, for example, can reduce carer burden. Psychosocial and educational supports for carers can also be valuable. Practical information on how to care is very important, as well as opportunities to meet other carers. Enhanced and personalised formal care provision for the person with dementia can also help to reduce the caring load on family carers
On average, the cost of HSE-funded formal home care to a person with dementia with moderate levels of dependence is about €150 per week. This includes home help, meals-on-wheels, Public Health Nurse and allied health services such as an occupational therapist or a physiotherapist, a range which is to be welcomed. The problem is that current government provision for people with dementia is generally considered to be unsatisfactory. Despite recent progress emanating from the National Dementia Strategy, services for people with dementia living at home do not currently meet existing levels of need. Family carers pick up the slack in relation to care for people with dementia and without them the care system would be in a much weaker position.
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From RTÉ Radio One's Morning Ireland, Aisling Kenny reports on the lack of funding for homecare packages for people living with dementia
In dementia care, the rights of the person with dementia are increasingly and correctly acknowledged as being at the core of decision-making. However, as this important shift occurs, it is vital that the rights of the informal carer are not overlooked. The two should no longer be viewed in isolation but complementary to each other, both equally valuable and worthy of consideration. This would refocus how care is both planned for and how care-effectiveness is measured in economic terms. It would involve a move away from examining the effects of supports, services or interventions to the person receiving the care in isolation, to including the health impacts and the quality of life gains of the carer and the cared-for in tandem.
The country is entering a crucial phase in progressing effective dementia supports and services, as part of the roll out of the National Dementia Strategy. New investment in dementia care must reflect the preferences and needs of both the person with dementia and their informal carer. Carers require more tangible and practical supports to allow them do the job that most love doing. The consequences of not supporting them will be significant for people with dementia and for society.
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
