Caregiving. org  just published a study on the Multiple Sclerosis Caregiver’s 
This is one of the best documents on MS’s toll on the caregivers and their care recipients we have ever read:
- Clear, (the 65 pages go fairly quickly),
- In-depth, but not excessively so
1. Time spent caregiving:
- “…On average, respondents spend 24 hours each week providing care to their care recipient with MS.
Number of hours of care, however, ranges quite substantially, from just one hour per week up to
168 hours—i.e., 24 hours, 7 days a week. More than one in ten (13%) report spending 40 hours
or more each week providing care to their care recipient. On average, family caregivers in general
spend 19 hours per week providing car
- Paid help:
“…A quarter of respondents report there is paid in-home care for their care recipient..”.
This excellent study is not without flaws though:
Figure 13: “Instrumental Activities of Daily Living” , does not mention the most demanding of advanced MS caregiving activities: maintaining the Disabled’s personal hygiene, which means CNA type of “heavy lifting” work. Maybe because that is done by a paid help, if money is available.
2. Impacts on caregivers
One of the hardest hitting part of the report is on page 30. It covers the emotional and financial tolls
2.1 The caregiving voyage:
- Figure 21, page 33
- The most striking positive impact is the strength of the bond care giver/care recipient, where, out of total of 52% caregiver responding to the question 30% claimed a significant positive impact and 20% a negative impact
The report further says: “…
Becoming closer with the care recipient and other family members is the most frequently sited
positive impact. Approximately three-quarters (74%) of those who say their relationship with their
care recipient was significantly impacted say it made them closer with their care recipient, and
47% of those who say their relationship with other families was significantly impacted say it made
them closer with those other family members…”
Those numbers seem to differ from Fig 21, but the qualitative conclusion remains: Substantially more caregiver claim a tightening of the bond than a loosening.
An interesting component of the relation, can be found in Fig. 24, p 37: In 29% of the caregiver care recipient relationships tend to argue a lot..
The worst impact is financial: where, out of total of 22% caregiver responding to the question 8% claimed a significant positive impact and 14% a negative impact. The surprise here is how could caregiving improve your financial situation at all…
2.2 Health data
Physical Health: a bit of a surprise “…36% of those who say their physical health has been significantly impacted say they are in better shape now that they’re a caregiver… ” . We never heard of caregiving improving your health...
Talk about accentuating the positive… this means, however, that 79% are worse off
Mental Health: from Fig 26 ; p 40, 26 % of the caregiver to cognitively impaired care recipients said that their mental health was negatively affected, that number is 43% if the MS person is cognitively impaired. This gives a total of 69% of caregivers negatively affected.
2.3 Financial data: “…Approximately one in five (21%) of those respondents who report their overall financial situation has been impacted by being a caregiver say that they have actually been able to save more money than if they had not been a caregiver… ”
The information below is ready to be used by MS caregivers advocates. We are sure it also applies to caregivers of people disabled by other causes than MS.
The report on Fig 27, p 41 shows the support care givers felt they needed the most 1 beeing the most critical of the list and 7 the least:
- Funding to pay for in-home care
- Medical paid care at home (or more medical paid care at home)
- Non-medical paid care at home (or more non-medical care at home)
- Respite care (i.e., short-term temporary relief for caregivers)
- A more accessible home
- More support from family and friends
- More education on how to provide care
4.0 Usage of the internet by the caregivers:
The data is in Fig 28, p 43: Internet surfing for MS related information varies between 80% to 40 % depending on the topic for people searching at least a few times a year.
Let us see, if there are 500,000 MS patients in the US and let us assume serious care giving starts when a person is confined in a wheelchair: What is the percentage of MSers that are wheel chair users?
Part of the answer is in a different article 
“…Within 10 to 15 years of disease onset, 80% of persons with MS experience gait problems due to muscle weakness or spasticity, fatigue, and loss of balance..” So, how many MSers are 10 years into their disease?
Maybe this calculation is not so simple… an educated guess would be 25%, that would mean 100,000 *80% or 80,000 caregivers visit the internet for MS related matters at several times a year. Hmm…
Note that on Fig 29, about 40%-50% of caregivers that survey the internet find useful MS information. Good…
5.0 Attitude regarding long term care facilities
From Fig 37 p 53:
- From 56% of caregivers:The trigger point is “when he/she requires 24 hour care”. Note that this means that even then 44% of caregivers would not quit…
- To a surprisingly high 14 % for ” When he/she can no longer control his/her bladder”
Caregivers, by and large are a determined bunch, and should get more of bipartisan public support!
This report is a must read for MS caregivers, and help agencies and their social worker, and caregiver advocates, even for non MS illnesses. Probably applies to Parkinsons’s, Alzheimers etc.
- Caregiving.org ; 2012
- caregiving.org/ MS caregivers-PdF; 2012
- Journal of Rehabilitation Research and Development ; “Multiple sclerosis and mobility-related assistive technology” ; 2010