At Carehome Selection, many of the families we speak to are struggling with care issues related to dementia support. There are now nearly one million people in the UK with dementia and the numbers are due to rise sharply in the coming decade.
Because dementia is a progressive disease, families of relatives with dementia often face difficult decisions when the individual’s care needs change; it becomes apparent that they are not coping and more support is urgently needed.
When should we ask for help?
There are a number of concerns which commonly trigger families to reconsider care arrangements. These include confusion, perhaps resulting in wandering outside the home and being disoriented, meals left uneaten or dangerous behaviour in the kitchen, such as leaving a pot boiling and forgetting about it. Your relative may seem lucid and to be functioning well at certain times of the day, but there may also be behaviour which causes you to worry about their safety. Safety is the bottom line – if you feel your relative’s safety and wellbeing is compromised, it is important to ask for help and have a professional assessment of their care needs. An independent and professional view will help to shoulder the burden – to make it clear what support should be put in place and to pave the way for changes if they are required.
What needs to take place and how?
It is very important that you have both a medical assessment of dementia and also a care assessment; these are two different things which both play an important part in deciding what is best for your relative. Your first port of call for help is your GP, although it is important that you are referred to a consultant specialising in dementia. If your relative has had an initial assessment, but you feel their condition has changed and worsened, you are entitled to ask for another evaluation of their dementia.
The Care Needs Assessment is a different step which looks as how your relative’s dementia affects their ability to look after themselves and manage on a day-to-day level. Several professionals are involved in this assessment – there will be medical input from your relative’s doctor or senior nurse, an occupational therapist will look at life skills such as cooking and self-care and a social worker will also be involved.
Will someone who has dementia qualify for continuing healthcare funding?
This is a question many thousands of families are asking. Continuing healthcare funding is free and provided by the NHS, but confusingly, some people with dementia are granted this funding for their care fees and others are not. Let’s start with how continuing healthcare itself is explained and defined by the Department of Health: “Care provided over an extended period of time, to a person aged 18 or over to meet physical or mental health needs that have arisen as a result of disability, accident or illness.”
The controversy and confusion arises in this area around the definition of “health needs”. While “health needs” are funded through the NHS, if needs are assessed as being primarily “social needs”, they will not receive NHS funding. When someone has dementia, their needs may be described as primarily social, rather than health and they would therefore not qualify for continuing healthcare funding.
Unfortunately, there is widespread variation in terms of whether people with dementia qualify for this funding and charities like the Alzheimer’s Society believe many people unfairly miss out on funding.
What happens next?
About two thirds of the people in the UK currently living with dementia are in their own homes. Unpaid family carers of course play a vital role in supporting thousands of individuals, keeping them safe and within their own homes but you may reach a stage when more professional help is needed to support the family help already in place.
If your relative has dementia, the assessment process for care will be the same, whether that care is going to take place within a care home or within their own home.
If someone with dementia is in their own home but needs further support: They may be entitled to funding from the local authority to pay for the costs of care in their own home. This will be decided by a means test and we discuss this assessment in greater detail here.
If your relative is not eligible for local authority funding, they will nevertheless be entitled to a number of benefits which will help towards overall costs. These include: Attendance Allowance (AA), Disability Living Allowance (DLA), Pension Credit and carers allowance. Your relative may also be entitled to reductions in council tax, help with heating and insulation (under the Warm Front Scheme) and help with repairs and improvements to their home.
If your relative’s dementia means they would be safer and better cared for in a care home setting with 24 hour support, our advisers can help you through the process of finding the right home to meet their individual needs. Some care homes specialise in the care of people with dementia, although it can be complex and confusing finding suitable homes, especially if people have dementia resulting in aggressive or difficult to manage behaviour patterns. We consider finding a care home for someone with dementia in more detail. We have two decades of experience in helping people with complex needs who need 24-hour care and know what care homes in your area offer and specialist support available.