Parkinson’s and Dementia: support for carers in the UK
By Rowan Pereira
We recently came across the heartbreaking court case of Thomas Middleton v Derby City Council, which shines a light on some of the day-to-day difficulties facing family carers, and the lines between family life and institutionalised care.
The facts of that case struck an emotional chord — the idea of being unsupported in your care for a loved one is a terrifying thought.
We wanted to explore the support that’s available for carers when they are caring for someone living with Parkinson’s or dementia. We found a wealth of information on support groups and help lines available for carers to access, which advise on everything from financial support to emotional wellbeing.
Both the Dementia Guide published by Alzheimer’s Society and The Carer’s Guide by Parkinson’s UK are fantastic sources of knowledge for carers and give brilliant overviews of what to expect, from dealing with diagnosis to how to get the most out of the health service.
First ports of call: Groups, Forums and Helplines
Many carers say that sharing experiences with others in similar situations provides an invaluable break from what are often challenging days. Carers can exchange practical tips and get emotional support from local groups. To find out where local Parkinson’s carer support groups are click here and to find local dementia carer support groups click here.
Parkinson’s UK have recently founded a six week carer course (A Path through Parkinson’s for Carers) that takes place in five locations across the UK (Leeds, Bracknell, Bolton, Torquay and Wolverhampton). The course aims to help carers manage the challenges they face and plan for the future. The Autumn session of the course starts in late September 2015 — click here to find out more.
Help lines are a great tool for obtaining quick, professional advice on many issues that carers face. The Alzheimer’s Society National Dementia Helpline is 0300 222 1122. Carers can talk to trained advisors who will be able to provide in-depth information and refer them to the most suitable sources of information for specific issues.
The Parkinson’s UK helpline is 0808 800 0303. This helpline also provides a ‘peer support’ service where carers can book up to six sessions with the same trained volunteer who will have first-hand experience of working with people who are living with Parkinson’s.
Online discussion forums are also a fantastic way for carers to connect with one another, often providing insightful information and reassuring stories. An Alzheimer’s Society dementia support forum can be found here, whilst Parkinson’s UK provides a support forum here.
Local authority and financial support
Every carer is entitled to a ‘carer’s assessment’ by their local authority’s social services. This assessment will consider the impact caring has on the carer’s life and accordingly offer appropriate advice and guidance to help with responsibilities.
The Carer’s Allowance is a taxable benefit available for people who look after someone who has an severe illness or disability. Although a carer needn’t live with nor be related to the person they look after, there are certain criteria they must meet in order to be eligible for the support. Carers can find out more and request an application form here.
The Equality Act 2010 states that a carer can not be discriminated against at work because they are a carer. Carers are entitled to a certain amount of flexibility at work in order to perform duties to the best of their ability. It is worth consulting with an advisor on either of the help lines mentioned above to find out more about carer rights at work.
Charitable benevolent funds are often available for people who are living with Parkinson’s and/or dementia. These can be one-off grant payments or longer-term financial support programmes. Carers can contact their local Citizens Advice Bureau for a record of these funds. It’s also worth noting that occupational charities sometimes offer support for people who have worked in a particular industry and those available for ex-servicemen/women are especially useful.
Similarly, large charitable organisations such as Age UK, Parkinson’s UK and Alzheimer’s Society offer funds for people in need, so it is always worth a carer investigating these organisations online and calling the respective helplines to see what support they might be able to get.
Other useful information points
- Carers Line 08088087777 or www.carersuk.org
- Local Citizens Advice offices
- Welfare rights units
- Disability organisations
- Age UK branches
- www.nhs.uk/carersdirect
- The Social Security Agency in Northern Ireland www.dsdni.gov.uk
- The ‘Caring for someone’ section on the nidirect website www.nidirect.gov.uk/caring- for-someone
- The carers’ section on the Health in Wales website www.wales.nhs.uk/carers
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