The high cost of living with Parkinson’s

People living with Parkinson’s spend more on staying well – buying items like pill-timers and prescriptions (these charges only apply in England), and travelling to their health appointments. They also face higher social care costs from adapting their homes to try to stay mobile, and they can face extra costs paying for assistance with daily tasks like cleaning and shopping. As the condition progresses, people with Parkinson’s who are still working, and their carers, often reduce their hours, or even have to retire, to contend with the condition. They may also lose out on benefits as the welfare system becomes more challenging to navigate.

People with Parkinson’s use a variety of medical services to stay well, including GPs, Parkinson’s specialist nurses, consultants, physiotherapists, speech and language therapists, occupational therapists and dietitians. However, people with Parkinson’s also frequently pay for private consultations when the waiting times in the state’s medical services are long or no service exists - for example podiatrists/chiropodists, optometrists or physiotherapists. The latest research found that people living with the condition also pay for other items to help them live on a daily basis, such as pill-timers, travel to health appointments and parking charges, and prescription charges that apply. The cost for people with Parkinson’s to attend private appointments and purchase equipment is on average £2 229.

The research found that many households that have a person with Parkinson’s have to pay towards changes that are needed to their home so that the person with the condition can move around it easily and stay independent. About half of the households that responded have made alterations to their home since the diagnosis of Parkinson’s. The changes were not easy, with some even moving house to limit pain and reduce the need to use stairs, or making alterations in anticipation of the condition progressing. The average annual expense contributed per household for equipment and adaptations to the home is £525. People with Parkinson’s often need to purchase equipment to improve mobility around the house, as well as improve balance and reduce falls outside the house. The research found that the most common items purchased are walking sticks, walkers, reclining chairs, raised toilet seats, wheelchairs, mobility scooters, specialist cutlery, stair lifts, grab rails and adjustable beds. As Parkinson’s is progressive and fluctuating it means that many people living with the condition find how it affects them can change from day to day, and even from hour to hour. Therefore they often need assistance with daily tasks around the home to enable them to stay healthy and well. Six out of 10 respondents need assistance to clean their house on a daily or weekly basis, with this rising to three quarters of people if they are over 75. Almost half of respondents need assistance with ironing, decorating or gardening. Around half of respondents need daily or weekly help with their shopping and around half of respondents need help attending their medical appointments.

A family member, usually a spouse, undertakes most of these activities. Those living alone receive help from their children or grandchildren. Despite this, figures continuously show that a significant amount of money is spent on accessing support from private care agencies, particularly for those in the more advanced stages of the condition. Assistance for daily living, including things such as personal care, transport to appointments or shopping, house cleaning and gardening were also included in this category and total £2 088. The results also show that about half of respondents need assistance preparing meals due to being unable to hold saucepans or safely cut up ingredients. This means that one third of people with Parkinson’s spend £305 on takeaways and convenience food every year. Over half of respondents stated they have additional utility costs (mainly energy) due to needing electric blankets or heaters to keep warm or air conditioners or cooling fans. On average households with a person living with Parkinson’s in the UK spend £572 extra per year on energy costs due to their condition. Eight out of 10 respondents have access to a car, with almost a quarter of these vehicles being a mobility vehicle. Almost 90% of respondents have had to meet the expense of these cars being modified out of their own pocket. In the UK people with Parkinson’s spend on average £132 for these modifications. Therefore living with Parkinson’s can result in incurred costs of £5 851. The research found that Parkinson’s directly impacts on employment and working hours. Half of those diagnosed, and one third of family members, have either reduced their working hours, looked for more flexible roles or given up work entirely. On average across the UK a working age person with Parkinson’s loses 62,1 work days per year as a consequence of having the condition, and carers lose on average 18,9 work days a year. People with Parkinson’s who are still able to work reduce their hours on average by 12,4 hours per working week and carers by 10,7 hours per working week. This means there is an average loss of income to the household of £1 981 in the UK. In the UK, one in three people with Parkinson’s have been forced to take early retirement or are unable to work due to their condition. This results in an annual average loss of £6 013 per household in the UK. The average overall loss of income due to living with Parkinson’s, from being unable to work or not getting the support they should receive, is £10 731 per household in the UK.

The majority of respondents with Parkinson’s noted a decline in their health, compared with around half of carers. Only a third of people with Parkinson’s reported their health was good or very good, with up to two thirds reporting a need for help with activities within and outside the house. The researchers used globally recognised scales to rate people with Parkinson’s and their carers against the general population of the same age. They found they were generally less well and less satisfied with their lives. This feeling increased the longer that someone had been diagnosed. People who had lost their independence (e.g the ability to drive or not being able to travel abroad) discussed how altering their life choices also came with extra stress (like trying to find hotels that have appropriate accessible facilities) and reduced their ability to be socially active. This could in turn reduce their feelings of positivity and satisfaction with their life. Research found that people with Parkinson’s and their families in the UK are on average £16 582 worse off per year as they have higher health and social care costs, lose income due to retiring early or reducing their hours, and lose out on state benefits. There is also a reduction in the quality of life of those living with Parkinson’s and their carers. Source: parkinsons.org