Functional status

Background: Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives.

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being.

Aim: To elicit the strategies used by Japanese family caregivers in the community to encourage older relatives with dementia to use adult daycare and respite stays.

Background: Older adults with dementia often require adult daycare and respite stays for their family caregivers to gain respite from care-giving. However, persons with dementia often face difficulty in new environments and timely access to sufficient services may be difficult to achieve. Few studies have examined how family caregivers encourage their service use.

Design: A qualitative method.

In the UK, the number of people with dementia is increasing along with life expectancy - over half of the £23bn annual cost of dementia is due to informal care time. Therefore, there is an economic argument for identifying clinically-effective and cost-effective ways to maintain and improve carer quality of life (QoL). This thesis explores the suitability of a capability based instrument, the ICECAP-O, for measuring QoL in informal carers of people with dementia. Methods: Systematic reviews, qualitative interviews, survey data and clinical trial data were used.

The purpose of this study was to describe the QoL of patients with AD (PAD) as perceived by family caregivers, and to analyze the correlates of such QoL. This study covered 92 PAD enrolled in a cognitive-motor stimulation study. The severity of cognitive impairment ranged from mild cognitive impairment to severe dementia. QoL was measured using the AD-related quality of life (ADRQL) scale. Social and clinical variables (for both PAD and caregiver) as well as other variables relating to cognition, activities of daily living (ADL), behavior, mood and caregiver burden were recorded.