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Huntington’s Disease Care

Being diagnosed with Huntington’s disease can be an uncertain and sometimes frightening time for the individual diagnosed and the surrounding family. However, with the correct care, you can continue living at home as normally as possible for a number of years.
Because Huntington’s Disease is degenerative, the level of complex care and nursing care will increase throughout the person’s life.

Four Oaks Healthcare is the UK’s leading provider of nurse-led complex care at home, and we get asked about this illness a lot. We appreciate that our duty is more than just performing clinical nursing care, so we have collated some of the most commonly asked questions we hear about Huntington’s Disease and have provided answers below. We hope it helps, however, if you require additional advice please do get in touch.

What is Huntington’s Disease?

Huntington’s disease is a hereditary disease caused by a faulty gene, that over time stops parts of the brain working properly. Because it is a progressive disease, those diagnosed will notice deterioration over time and will require an increasing amount of care.

Since there is no way to cure or stop Huntington’s Disease from progressing, finding the right complex care provider to give the client the assistance they need is essential.

Whether investing in our services during the early or later stages of illness, our main goal is to help our clients develop new skills to cope with changes and retain control over their home environment.

What Is The Cause Of Huntington’s Disease?

Huntington’s Disease is inherited and it is usually only a risk to you if one of your parents have been diagnosed with the condition. There is a small chance of developing this disease without any history of it in your family, however, this is usually due to your parents not being diagnosed with it rather than not having the condition at all.

How Do People Get Huntington’s Disease?

If someone has been diagnosed with Huntington’s Disease there is a 50% chance that their children will develop the condition. If the children have not inherited Huntington’s Disease they cannot pass the condition on to any of their children. However, children that have inherited the condition are able to pass the illness on.

What Does Huntington's Disease Look Like?

Because Huntington’s Disease is essentially damage of the brain, movement, reasoning and behaviour can be affected. Symptoms will increase gradually and, sadly, there is no cure for this illness.  Symptoms Of Huntington’s Disease include:

Stumbling and, or clumsiness
Problems swallowing and speaking
Respiratory problems
Difficulty moving
Lapses in memory
Mood swings and personality changes
Depression

How Is Huntington’s Disease Treated?

Although treatment of symptoms cannot cure Huntington’s Disease, correctly applied continuing care can greatly help to reduce some of the problems it can cause. Your clinical nurse specialist and carer can help to administer:

Medication: to help with depression, mood swings and involuntary movements
Speech and language therapy: to help with communication.
Therapy: to assist with feeding.
Physiotherapy: to help with balance and movement.
Occupational therapy: to assist in making everyday tasks easier.

Our complex care providers are highly trained in supporting the client and family emotionally through what can be a challenging time. We work to help you learn to spend quality time together as a family irrespective of the condition.

Care For Huntington’s Disease

There are a variety of options available to assist you on your journey in addition to investing in a day carer or live-in carer. These include your local GP surgery, specialist clinics, neurologists, mental health and other forms of therapy and much more. When it comes to ongoing support you can invest in either daily support or even live-in care support depending on your current and ongoing needs.

Daily Care: This involves a clinical nurse specialist overseeing and supervising all care. You will be assigned a carer that is fully trained and experienced in Huntington’s Disease care. Your carer will visit regularly to assist you with everyday tasks. This form of care is best for people who have been recently diagnosed and are beginning to struggle with their symptoms.

Live-In Care: This form of care may be the best option for someone whose symptoms have progressed to a point where a lot of assistance is required throughout the day and even at night. Your live-in carer will be able to provide the treatments mentioned earlier and will be on hand 24 hours a day, 7 days a week. This type of care is particularly helpful as it allows any family members that have been caring for you to go to work with a peaceful mind knowing that you are not alone.

Testimonials

What Our Clients Think

From the moment I contacted this organisation, the staff have always been polite and incredibly helpful. They have had to step in at short notice when other providers have let us down. They have provided everything we have asked for in a thoroughly efficient and professional manner. All staff have been incredibly caring and thoughtful when approaching my mother’s needs. As a family, we are incredibly grateful for the service provided and I personally have already recommended the organisation to a potential client and a potential employee. We will have no hesitation in using these services again.
Sandra H
My parents have a live-in carer from Four Oaks Healthcare. This service has enabled my parents to stay together at home. Since the live-in carer started caring for my parents, it has enabled the family to relax and feel confident that our parents are safe and being well looked after. As a family, we can now visit our parents and spend quality time with them instead of time spent caring and worrying about their health and wellbeing.
The regular live-in carer is extremely competent in relieving the family of the burden and worry, she is kind and respects the wishes of our parents. When the regular carer has a holiday the replacement carer was also very good, keeping the continuity of care. We are extremely happy with the service provided by Four Oaks Healthcare.
Christine S
It was very apparent from the start when the first carer walked through the door for this first time just how caring and committed she was. This continued as we met mom’s other 5 carers. Every single one of them were fantastic with mom, taking time to speak to her, find out what she needed and always making sure that they cared for her with dignity. Also on numerous occasions, asking if we needed anything, which has got to be well over and above what is expected and so very much appreciated.To be brutally honest we were all dreading having strangers coming into the house but this was a very short-lived worry as everyone was so caring, so committed, so professional and so polite, putting us all completely at ease.

In our experience Four Oaks were outstanding in every way.

Chris J

Perhaps the biggest single plus about Four Oaks over previous care providers is the ability to provide continuity of carer. I am convinced my mother has benefited from the stability of having the same compassionate, competent and dedicated carer for the past eight months

Paul K

What Qualifications Do Huntington's Disease Carers Have?

Our Huntington’s Disease Carers are subjected to a rigorous and thorough selection process, where we determine suitability based on 6 key skills/aspects:

Significant Experience within Personal Care
A Compassionate & Caring Nature
Strong Organisation Skills
Flexibility, and ‘Client First’ Availability
Excellent Communication Skills
Sensitivity to Care Recipient Needs

Four Oaks Healthcare insist on delivering an unmatched level of care, and in order to do this, we only recruit and select the most appropriate and skilled caregivers

Why choose Four Oaks Healthcare for your Huntington’s Disease care?

Providing the highest quality clinical complex care is paramount to our carers at Four Oaks Healthcare. With each person’s experience of the disease being so different, it is crucial that everyone receives a care plan tailor made to their needs and wishes.

When you choose one of our complex carers, you will also be assigned a clinical nurse specialist, who will oversee and supervise all care and development of the individual and ensure that we are constantly doing the most we can to retain the client’s independence and enable them to live their life on their own terms, while still receiving specialised clinical treatment.

Through ongoing supervision by your loved one’s clinical nurse specialist, your day or live-in carer can ensure the ongoing and developing needs of the client are fully catered for. We provide this service across the UK, led by our team in Birmingham.

If you would like to discuss our service and your unique situation we would be happy to arrange an initial assessment and chat. Get in touch by calling 0333 772 0156 or complete our online enquiry form and someone will be in touch with you.

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