Published: 6/18/2014 9:33:53 PM
Caregivers likely know that "dementia" refers to a decrease of mental abilities that is severe enough to impact everyday tasks. Though many people know that the most common form of dementia is Alzheimer's, they may not be as familiar with other conditions, such as Huntington's disease.
When loved ones are first diagnosed with Huntington's, caregivers may feel unprepared to handle their responsibilities because they may think that information about this condition is not widely available. However, proper research can be easy as long as caregivers know where to look and work closely with doctors to determine the best dementia products to invest in, who to include in the care team and other aspects of future planning.
What causes Huntington's disease?
According to the Alzheimer's Foundation of America, there is a gene that is found in every person and has a triplet repeat sequence. Those with Huntington's disease have an unusually large number of triplet repeat sequences in the gene.
Additionally, the AFA pointed out that Huntington's disease does not skip generations. The children of a parent with Huntington's disease have a 50-50 chance of developing the condition. If the children do not inherit the defective Huntington's disease gene from an affected parent, then they will not pass it onto their own children.
How is Huntington's diagnosed?
The Alzheimer's Association stated that in 1993, scientists identified the gene that is responsible for virtually all Huntington's disease cases. Using this information, scientists were able to design a diagnostic genetic test that can determine whether the defective gene is present in people who are the children of an affected parent. This allows them to figure out whether they will be at risk for developing the condition. The test also allows doctors to determine whether suspected Huntington's symptoms are indeed being caused by the defective gene.
What are the symptoms?
Symptoms will typically appear between the ages of 30 and 50, according to the Huntington's Disease Society of America. These will progress for about 10 to 25 years. Though the mid-life years are the most common time for Huntington's disease symptoms to occur, they have been known to occur before 30 and as late as 80.
Symptoms affect people's bodies, minds and emotions, making it a complex disease to work with for those with the condition and their caregivers.
- Uncontrolled movements: These occur in the legs, arms, face, head and upper body.
- Cognitive function: People's ability to think, remember, reason, judge, concentrate and organize will decrease over time.
- Mood changes: Individuals will go through mood changes, including depression, anger, irritability and anxiety. They may also develop obsessive-compulsive behavior.
Given the broad range of symptoms, caregivers may be concerned with how to best care for their loved ones. The HDSA noted that there are three stages of Huntington's disease, all of which caregivers should prepare for by speaking to doctors and other health care professionals.
- Early stage: Mood changes, including depression and irritability, are common in this stage. Caregivers may also notice some subtle physical symptoms, such as involuntary movements, which is also known as chorea. Family members may also experience difficulty thinking.
- Middle stage: Chorea may become a more serious problem at this point. Additionally, loved ones may have trouble speaking and swallowing. Therefore, caregivers may want to think about working with physical therapists and speech pathologists. Caregivers can also look into caregiver guides on how to work with people who have trouble communicating or have mood changes.
- Late stage: In this final stage, people rely entirely on caregivers. Though they cannot speak or walk, they do recognize family members and friends. This underscores the importance of caregivers developing strong relationships with those whom they care for.
In addition to physical therapists and speech pathologists, there are medications that can be used to treat the various symptoms of Huntington's disease, including mood changes and chorea. Figuring out the best care plan involves working with all members of the team, including those with the disease, their primary care physicians and others.
Create a care plan
Regardless of how far along loved ones may be in the stages of Huntington's disease, there are many tools and resources for caregivers, from dementia products to specialists.
The HDSA pointed out that although Huntington's disease is progressive and those with it will require more care over time, individuals with the condition are able to live independently with help for many years. Therefore, caregivers should work closely with their loved ones to figure out the level of care that they need as time goes by After all, it is essential for those with the condition to lead happy, productive lives.
Caregivers can also look into local support groups, where they and their family members can speak with others going through the same experiences.