Dementia is not a single specific disease, but an overall term that encompasses several medical conditions including Alzheimer’s, Lewy Body Dementia, Vascular Dementia, Frontotemporal Dementia, and other disorders such as Parkinson’s and Huntington’s. Alzheimer’s accounts for the majority of cases. Dementia in general is a term used to group disorders that are caused by abnormal brain changes. These changes result in a decline of cognitive abilities that impair daily life and independent functioning, as well as behaviors, feelings, and relationships.
According to the CDC (center for disease control), 80% of people diagnosed with dementia, (60%-80% with Alzheimer’s), are taken care of in their homes and usually by a family member. This comes to about 16 million people who are caring for family members each year who have been diagnosed with dementia and most often Alzheimer’s. About two-thirds of caregivers are women who will contribute to the total of 17 billions unpaid hours of care in a year. About one in three caregivers is over the age of 65 and one quarter of caregivers are termed as “sandwich caregivers” meaning they are caring for an older generation as well as children under the age of 18. More than half of caregivers who are caring for a person with dementia give care for four years or more and expect to have these responsibilities for five years or more. This is greatly larger than caregivers who are caring for someone without dementia.
Caring for your loved one can make all the difference in their care and does have benefits for both parties. For many family members, there is a peace of mind in knowing that their loved one is in a familiar setting and their most comfortable. Having the opportunity to spend quality time and give back to a loved one can also be fulfilling. Your bond can become stronger and deepen.
However, as dementia advances, a loved one’s needs generally increase and the caregivers’ responsibilities become more challenging. Many dementia caregivers experience sadness, loneliness, depression, and anxiety at some point due to the pressure and challenges. Fatigue and exhaustion can also become chronic as well as increased financial and work complications. Many caregivers experience compassion fatigue and burnout. This can lead to a poor relationship between you and your loved one, strain on personal relationships, and unfortunately can also lead to elder abuse (physical, financial, emotional, and neglect).
What can you do?
Preparing for the road ahead. Learning more about your loved ones diagnosis can help you prepare for future challenges, reduce frustrations, and keep expectations realistic and reasonable. Research options for long-term care and different kinds of care your loved one may need. The better prepared you are, the easier things will be.
Have a personal support plan. More than likely, caring for a loved one will not be the only job at a time. It takes skill, patience, and support from others and for yourself in order to have it all balanced. Ask for help. Make use of available resources. Join a support group. Talking to someone, exercising, planning your own self care, etc.
Develop routines. This is not just for the person with dementia, but also for the caregiver. The benefits are good for both. Things run more smoothly and give both people a sense of consistency. Plan and vary activities that will be successful and are of interest for your loved one. Getting time outdoors is also greatly beneficial.
Whatever your situation, there are always services available and people to help. Do not put yourself last. Be the best you can be by taking care of yourself first. Your loved one will thank you.