Nursing Approaches to Care In HD

Print WordDOC: Nursing Approaches to Care In HD

Nursing Approaches to Care In HD

From: Nursing Care In Late Stage Huntington Disease

To start I would like to begin with the basic principles, we as healthcare givers use in all of our practices. These are especially important to remember when working with persons with Huntington's Disease as not all the same practices will work with everyone.

Persons with Huntington's Disease are normal, healthy, high functioning individuals until they begin showing symptoms of the disease and then they slowly begin becoming more and more dependant on others for their daily activities and eventually loose total control of their lives, needing others to do for them.

The basic principles to guide any of our inter-ventions we as health caregivers undertake are as follows :

1) The client is entitled to the best quality of care.

2) Everyone is entitled to a sense of hope for a better life.

3) The client is the center of our care.

4) We are caregivers must be flexible, innovative and always keep an open mind.

5) Value your own style in what you do, but also value that of others. Your personality is your most valuable asset, so use it.

Some philosophical hypothesis based on contact with persons with Huntington's Disease and their families to maintain optimum care modalities are as follows :

1) Persons with Huntington's are capable of living a satisfying life during the course of the illness.

- Caring takes precedence over curing when as in Huntington's there is no cure available. So the care provided to a person is important to aid the individual and their families to live a close to normal and enjoyable life as possible. Caring is necessarily total, comprehensive, holistic and balanced.

2) Persons with Huntington's Disease are capable of using retained abilities, and learn new living skills and strategies.

- Their abilities they have need to be maintained and optimized and are more relevant then working with the irreversible disabilities. Within a structured routine they are able to learn to do tasks as a repetition, day in and day out and in this way they can learn to do a task in a more modified way that they are capable of at the stage of illness.

3) Improved quality of life will have a beneficial effect on the course of Huntington's Disease.

- The quality of life is more to be preserved than the quantity of life, the better quality of life the more enjoyable a person with Huntington's and their families can have together and a more fulfilled life.

4) Comprehensive care for Huntington's Disease persons will have , in the long term, benefits for families.

As I have already discussed, caring is necessarily total, comprehensive, holistic and balanced. Huntington's is a disease not only of an individual, but of a whole family as it has an impact on a familys dynamics. A familys dynamics changes but when care is taken with aid and assisting the whole family, everyone will benefit.

5) The community and the health profession can be educated, using Huntington's Disease as a model, to place more emphasis on caring medicine.

6) Comprehensive care in Huntington's Disease can be used as a model for developing innovative health care delivery to the neurologically disabled and the elderly.

Loss of control, power and autonomy is a major issue in Huntington's disease, as this is a neurological disease in which there are cognitive, emotional and physical changes. But one important thing to remember is that a person with Huntington's does know what is going on around them.

Remember they were a normal, healthy, high functioning individual that slowly looses control of their movements, actions, ability to attend to their personal care and eventually needing to depend on a person or persons for all their activities of daily living.

As an individual they are noticing themselves how they are loosing their abilities and this is a scary and emotional period for them.

We as health caregivers have to in different ways depending on the stage of illness help the person with Huntington's Disease feel they still have some control of what is going on in their lives. We always have to give them some power and decisions to make.
One important way to do this is to always maintain a structured routine for them, ensuring to implement it for them making changes only when necessary and allowing the person a choice, remembering to give a choice of one thing or another. Not more than two things to choose from.

As the disease progresses more changes would need to be made to the routine, or at least how things in the routine are performed. This is what takes a lot of time, patients and working together with the client and family to see what works best for everyone.

So we as caregivers need to help the client feel more in control therefore more powerful.

What is Power ?

-- Knowledge and information bring power

- So it important to get to know your client and family and what has been problems and issues for them.

-- Respect is power

- Always respect your clients and their families, and put yourself in their position, this helps you to respect them more. This is their lives and how they have to live so respecting them and their wishes will give you respect in return.

-- Communication is power

- Always tell your client what the plan is, next in the routine, explain what you are going to do before you do it and while you are doing it. Also remember to always listen to what your client is saying, watching especially for their nonverbal cues as well. They need to know that what they think and say matters and that you are listening to them.

--Making choices is power

- Allowing a person to choose between one item or another, such as wearing a blue shirt or a red shirt, is a way of empowering them. They get to decide which of the two to wear, which helps them feel in control, they decided and nobody told them what to do.

And ...

-- Receiving help to maintain control is power

Before getting into specific care needs for persons with Huntington's Disease, I thought I would share with you a sample of nursing diagnosis in late stage Huntington's Disease.

Alteration in regard for safety. Especially of self safety, this being compounded by impulsiveness, unrealistic expectations and problems with memory.

Alteration in mobility. Related to uncoordinated movements.

Alteration in nutrition. Related to swallowing and choking which causes fears around eating and drinking.

Alteration in swallowing. Related to impaired voluntary control of mouth, tongue, swallowing mechanisms, respiratory control and impaired judgment.

Alteration in self care. Related to uncoordinated movements and cognitive changes.

Altered and impaired judgment and poor impulse control related to cognitive changes.

Alteration in emotional comfort. Which may be a result of behavioral manifestations, for example depression, loneliness, anger, fear, explosive outbursts and alienation.

Alteration in communication. Especially speech which results in difficulty being understood and in turn results in powerlessness, frustration and alienation.

Alteration in social relationships. This is a family disease in which there are enormous changes in the "normal " family life.

Alteration in elimination. Incontinence is an eventuality in the late stages.