Seeking Support when Dementia Takes Hold


Posted on: 14 January 2017 by Jose Calvo

As the global population continues to age at a rapid pace, new concerns arise about the rising cost of managing an older demographic. Health conditions prone to negatively impacting older adults are slated to increase at a higher rate than may be manageable for health systems in terms of providing quality care and the cost associated with that care.

Dementia is one of the fastest growing health epidemics affecting older adults throughout the world. As of 2015, an estimated 46.8 million adults were living with dementia, and by 2030, the medical community predicts that just under 75 million will be living with the debilitating condition.

While progress is being made in the fight to find a cure for dementia and related health conditions like Alzheimer's, individuals living with dementia and the people who take care of them are in need of a greater understanding of available support. Within the UK, a variety of care from family, friends, national health systems, and social sources create a strong foundation for support, but questions often remain as to how that care is accessed and by whom it is paid. Seeking care, then, becomes a confusing and, at times, frustrating ordeal that leaves the individual with dementia without a viable means to continue living an autonomous, high-quality life. For those seeking care for an individual with dementia, this guide offers a place to start.

Paying for Care

In 2014, the Care Act was set in motion for the explicit purpose of reforming the law relating to care for adults living with cognitive impairment and the support provided by local sources to assist caregivers. Within the Act, certain provisions are laid out which are meant to encourage the well-being of older individuals while empowering them to live an independent life for as long as possible. These provisions include the following:

·         Individuals must have access to quality information and advice from local authorities

·         Local authorities must ensure that individuals receive services that prevent their care needs from becoming more serious

·         A range of high-quality, appropriate services must be made available

Each provision found within the Care Act must be provided to adults and their caregivers, regardless of who pays for care services.

National rules exist regarding who is responsible for paying for care and support for older adults with dementia and their caregivers, but some variations exist based on local authorities. When an individual with dementia lives in his or her own home, the cost of care falls on their shoulders. However, local council may contribute depending on the individual’s total income and assets such as savings or investment accounts. If the financial ability of the individual is deemed high enough, no contribution is made to help pay for the cost of care or support. However, costs are required to be reasonable under the Care Act.

The same assessment is performed when an individual with dementia lives in a care home. Lower-income individuals have the opportunity to have their care and respective support to caregivers paid for by local authorities in certain situations. The assessment is conducted by the local authority to determine what level of care, if any, is eligible for outside contribution, or if individuals are able to fund care on their own. In either case, local authorities also have a duty to provide financial advice to those who may be in need of it. Determination of mental capacity is required before access to independent financial advice or information can be provided.

Managing Complaints

Guidance from local authorities on paying for care and garnering pertinent information about support and financial advice includes some direction on managing complaints made by individuals and their caregivers. First, any attempt to settle a complaint should be brought to the attention of the care home or health system to give the body an opportunity to rectify the situation. NHS clinical commissioning groups and some care home publish information and guidance relating to submitting complaints and the rights of individuals living with dementia.

A representative from a leading medical negligence law firm explains that utilizing a community resource like a family clinic may be beneficial when a cause for a complaint arises. In a family clinic, caregivers have the ability to seek out no-cost legal support from experts in the field on behalf of the individual for whom they provide care. When no recourse is imminent from the care home or health organization, or information is not provided by local authorities, a family clinic can be a viable resource for caregivers.

Until a cure for dementia is found, older individuals, their family, and friends have the right to understand how care for the condition is made available in their communities. They also have specific provisions under the Care Act and can seek help for organizing and paying for care when a need presents itself. Older adults should have access to affordable, high-quality care as they age, and the ability to maintain a quality of life infused with both dignity and respect, regardless of their condition.

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