Falling in Parkinson’s disease: The impact on informal caregivers
Davey, Wiles, Ashburn, & Murphy (2004) Falling in Parkinson’s disease: The impact on informal caregivers , 2004 Dec 2;26(23):1360-6
This study attempted to look at the views, experiences, and needs of informal caregivers (nonprofessionals, typically family members not receiving payment) of patients with PD that experience regular falls. It should be noted that this is a study only looking at the views of 14 caregivers and is not statistically studied. The article discussed the increased risk of falling in patients with PD as compared to healthy age matched controls. The authors noted that although PD generally responds well to medical therapies, falling difficulties typically do not. They suggested multiple studies have found that difficulties with falling decrease the quality of life in patients with PD. The authors hypothesized that falling is also very challenging for the caregivers of patients with PD. They cited two studies that suggested caregivers experienced more stress when their family member had falls (in stroke patients) and that emotional consequences of the fall may be worse for the caregiver than the patient. The authors purport that there is limited information and support for the family from professions allied to medicine (Occupational therapy, physiotherapy, and speech therapy). They suggested that a multidisciplinary approach may assist with shared information and generally a better treatment approach for the patient with PD. The authors audiotaped "in-depth, semi-structured interviews" lasting approximately 45 minutes (range 30-90 minutes) with 14 marital caregivers (11 women, 3 men; mean age 69.9, duration of spouses PD 16.7 years) of patients with PD that had experienced repeated falls in the prior 12 months. The topics they focused on were 1. The caregiver’s account of the falls, 2. Caregiver concerns and anxieties about the falls, 3. Management of the falls, 4. Advice given and from whom, and 5. What information or assistance they would have found beneficial. 1 & 2. Spouses had many hypothesis why their partner fell, including movement symptoms of PD (e.g. freezing, stooped posture, shuffling gait, decreased ability to turn), side effects of taken medications, hallucinations, low blood pressure, patient taking risks, difficult to control walking aids. The spouses indicated that there were multiple consequences of the falls including physical (minor to severe injury to the person with PD), psychological (loss of confidence and fear of falling), and social (decreased/affected activities outside of the home). 3. Spouses indicated that they also have significant anxiety and fear about their spouse falling. Interestingly, the concerns were not solely focused on the immediate consequences (pain, injury) but also on the impact of the fall on the person with PD’s quality of life and survival. The article quoted various spouses and is quite interesting to read. Spouses indicated that they managed falls in various ways, including prevention (vigilant 24 hour monitoring, positioning, and accommodative devices such as rails), minimizing the consequences of the fall (having a specific person to call after a fall for assistance and avoiding "awkward" areas of a house), and helping the person with PD to get up of the floor (equipment, asking others for assistance, getting the person up themselves.) 4. Most spouses indicated that they had not received information on what to do after their partner had fallen or where they would get such information. The spouses that indicated that they had received information from occupational therapist or physiotherapists, about falls but noted that the information was about preventing a fall (environmental changes, assistance while walking) versus what to do afterward. Spouses that attended support groups indicated that the topic of falls was talked about at meetings but was not as prominent as they would like. 5. Partners indicated that they had experienced physical, psychological, and social effects from falls by the patient with PD. Spouses incurred physical injuries from trying to catch their partner as well as help them up after a fall. The 14 caregivers noted mixed feelings in regards to their partner’s falls including, anxiety, worry, fear, shock, anger, and frustration. Lastly, some of the spouses indicated that they did not feel they could leave their partner with PD alone for any amount of time due to their falls, and tended to decrease their activities outside of the home for that reason. This article addressed many good and relevant issues for informal caregivers and highlighted that there is not enough information or training available to assist these caregivers when their spouse with PD has falls. The article also highlighted that some caregivers do not have access to available information, are unsure where to get the information, or do not have the time or energy to seek the advice. (Such information may be received from occupational therapists, physiotherapists, and PD nurses). The authors encouraged health care professionals to be more proactive in giving informal caregivers information as well as establishing courses or other support for those caregivers.