Table 1.

Demographic and clinical details of the sample

Characteristic	People with MND (n=25)	Caregivers (n=10)
Age (range 39–80)
35–50 years	3	0
51–65 years	12	4
66–80 years	10	6
Gender
Male	15	5
Female	10	5
Relationship to person with MND
Spouse/partner		10
Diagnosis
ALS limb	18
ALS bulbar	1
Primary lateral sclerosis	4
Progressive bulbar palsy	1
Progressive muscular atrophy	1
Time since diagnosis (range 2 months to 17 years)
Less than 1 year	8
1–3 years	6
3–5 years	7
More than 5 years	4
Difficulties reported often/always* (ALSAQ-5 scale)
Difficult to stand up	16
Difficult to use arms and hands	16
Difficulty eating solid food	4
Speech is not easy to understand	9
Feeling hopeless about the future	3
Self-reported concerns about cognitive ability	2

*ALSAQ-5 is a patient self-report questionnaire used to briefly measure the impact of ALS/MND on patients.⁵¹

ALS, Amyotrophic Lateral Sclerosis; ALSAQ-5, Amyotrophic Lateral Sclerosis Assessment Questionnaire 5; MND, motor neuron disease.