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What Dementia Caregivers Should Know About Burnout

Tiffany A. O’Connell, Esq., LLM, CELA, AEP®
Principal Attorney
O’Connell Law LLC
When your family member is diagnosed with dementia, there are many considerations and questions that must be answered as soon as possible. When immediate nursing care in the home or elsewhere isn’t an option, it’s family caregivers who fill the gap for dementia patients at home.  Even when the family member is in an assisted living facility or nursing home, it’s family caregivers who still find themselves filling in the gaps where a facility just can’t meet all the family member’s needs. 
Providing care for a loved one is an overwhelming experience no matter the medical diagnosis.  The unpredictable scope of the caregiver job means that it can be difficult for family members to maintain balance in their life.  Balancing home life and family, work obligations, and caregiving for the family member with dementia is a delicate balance that can very quickly feel all-consuming and difficult to manage.
Furthermore, in certain cases, dementia conditions can worsen so much that the person needs professional dementia care support in an assisted living or nursing home setting. Some of the unique issues faced by dementia caregivers can include:
• Issues with helping the loved one as concerns over speaking, walking, and swallowing worsen due to disease progression.
• Fearfulness of the loved one’s behavior
• Changes in mood
• Anxiety over the loved one’s disorientation or wandering behavior
The progressive nature of dementia adds to the level of unpredictability and also the emotions that the caregiver is coping with. Caregivers should be mindful of when the situation has escalated to the point that it may be better to place the loved one in an assisted living facility or nursing home. Research has found that:
• One in 5 family caregivers have poor or fair health
• Between 40% and 70% of caregivers say that they are dealing with anxiety or depression
• The mortality rate for spousal caregivers who are older than age 66 is 93% higher when compared with their non-caregiver counterparts.
You’ve probably heard the pre-flight announcement on an airplane that you need to put your oxygen mask on first before helping the person next to you with their mask.  The same principle applies with caregivers.  It’s crucial for the caregiver to pay attention to their own physical and mental health.  This not only helps the caregiver, but also helps the person with dementia since the caregiver is in a better position to be able to help.
Caregivers can and should also take advantage of local support groups.  These groups can provide a sounding board and can also be a good source of information for the caregiver.
Finally, it’s critical that the caregiver have the person with dementia meet with an estate planning attorney well before the family member’s condition reaches the point where they no longer have capacity.  The estate planning attorney should be well informed on dementia and Alzheimer’s and should be brought in well ahead of a crisis.  The attorney can help make sure that all legal documents are in place so that the caregiver can do what they need to do from a legal end for both financial and medical matters whenever the time comes that the person with dementia can no longer handle those matters themself.  It shouldn’t be surprising that not having the necessary legal documents in place can further aggravate a caregiver’s level of burnout since the caregiver will need to seek court involvement in order to help their loved one.  Getting these documents done years ahead of needing to use them is always the best option