A Palliative Approach to Care
This Help Sheet aims to present the principles of ‘A Palliative Approach’ to care workers supporting people with MJD in general care settings: in the community, in respite and in residential care. It may be helpful to care staff, community workers and families as they learn effective ways to support people with MJD as a degenerative and life-limiting disease.
Nutrition
Weight loss and malnutrition are common in people with Machado-Joseph Disease (MJD). The symptoms of MJD are complex and interrelated. This Help Sheet provides general information about nutrition for people with MJD. It is important to remember that each person with MJD needs to be assessed and supported according to individual need.
Social and Emotional Wellbeing
There is evidence that people with Machado-Joseph Disease (MJD) have higher rates of depression, anxiety and apathy. Depression in people with MJD may be reactive to the physical incapacities, sleep disturbances and fatigue rather than the neurological damage of the disease process.This Help Sheet explains the social and emotional impacts of MJD and provides information about appropriate social and emotional support strategies.
It’s Hard to Talk
When people have Machado-Joseph Disease (MJD) they find it hard to talk. When it starts, it is just a bit slurred when they talk. But then it gets worse. This help sheet outlines some of the strengthening exercises and support tools that can support people with MJD when they start to find it hard to talk.
Communication Difficulty
People with Machado-Joseph Disease (MJD) experience significant speech loss throughout the progression of the disease. ‘Dysarthria’, or slow, slurred speech, is often an early sign of MJD, and may progress over time to complete speech loss (Anarthria). This Help Sheet explains some of the changes in communication that occur as a result of MJD and shares ideas on ways to communicate well with someone with MJD.
Urinary Continence
Neurogenic bladder is a common feature of Machado-Joseph Disease (MJD) and describes the condition when the nerve pathways that control bladder function are impaired. This can cause issues related to overactive bladder (OAB) like urinary incontinence (UI) and retention. This Help Sheet provides general information about urinary incontinence that may be encountered by people living with MJD. It is important to remember that each person with MJD needs to be assessed and supported according to individual need.
Bowel Issues
Neurogenic bowel dysfunction (NBD) is a common feature of Machado Joseph Disease (MJD) and results in faecal incontinence, constipation or both. There are locally documented deaths of MJD clients from bowel obstructions. This Help Sheet provides general information about bowel issues that may be encountered by people living with MJD. Clients should be assessed and supported according to individual need.
Safe Feeding Utensils
This poster describes common feeding and drinking utensils that support safe swallowing.
Feeding Posters
These safe feeding posters cover: meal time safety, making food and drink easier to consume, correct feeding positions during and after eating, and signs and symptoms of problems when feeding.
Safe Feeding Strategies
This document outlines safe feed strategies for people living with Machado-Joseph Disease (MJD), including: positioning for safe feeding, signs and symptoms of feeding problems, mealtime safety, making changes to food and drink, and safe feeding utensils.
