Caregiving for my mother was on my radar for years. It wasn’t a surprise when she came to live with me in October 2014. Her progressive vascular dementia, however, made for some difficult times.
What was unexpected was learning in August 2015 that my otherwise healthy, 57-year-old husband had early-onset Alzheimer’s disease.
For me, National Family Caregivers Month and National Alzheimer’s Awareness Month, which both are marked in November, are near to my heart.
This month, the Alzheimer’s Association is highlighting six terms that are important for Alzheimer’s and dementia caregivers like me to know. In Illinois, there are more than 383,000 of us providing care to more than 230,000 people with Alzheimer’s.
One thing I’ve noticed in my own experience is that it’s not always easy to find the information I need. That’s why I’m happy to pass this along.
Here are the six essential terms Alzheimer’s and dementia caregivers need to know:
1. Person-centered care: Most often associated with professional caregivers in long-term care settings, person-centered care can help family caregivers too. It requires understanding the world from the perspective of the individual living with dementia. It encourages considering their interests, abilities, history and personality when interacting with them and making care decisions.
2. Dementia-related behaviors: The term is used to describe wide-ranging behavioral symptoms associated with Alzheimer’s and other dementias. Although most people think memory loss, there are other challenging behaviors as well: aggression and anger; anxiety and agitation; depression; sleep disturbances and sundowning; wandering; and suspicions and delusions. The Alzheimer’s Association offers tips and strategies online at alz.org.
3. Caregiver burnout: Caregiving for someone living with Alzheimer’s or another dementia can be exhausting mentally, physically and emotionally. The Alzheimer’s Association offers a “Caregiver Stress Check” to help caregivers identify and avoid burnout.
4. Respite care: Respite care provides caregivers a temporary rest from caregiving while the person with Alzheimer’s receives care in a safe environment. It can be provided at home – by a friend, other family member, or voluntary or paid service – or in a care setting, such as adult day care or long-term care community. It can support family members’ abilities to be a caregiver.
5. Care consultations: A care consultation can help family members work through tough decisions, anticipate challenges and develop an effective care plan. The Alzheimer’s Association offers free care consultations through its 24/7 help line (800-272-3900). Master-level clinicians work with families to discuss issues – including disease progression, care and living options – and provide referrals to local support services. In addition, Medicare covers care planning for individuals with cognitive impairment. Many family caregivers aren’t aware of this valuable benefit, which reimburses health professionals to provide affected individuals and their caregivers with information about medical and nonmedical treatments, clinical trials and support services in the community.
6. Treatment pipeline: There are more than 100 disease-modifying Alzheimer’s treatments in clinical trials – researchers often refer to this as the treatment pipeline. Caregivers are encouraged to stay abreast of potential treatments. Caregivers and individuals living with Alzheimer’s or another dementia can help advance these treatments by enrolling in a clinical trial.
Education is one of the main ways we caregivers can understand the Alzheimer’s disease and dementias that we deal with daily. Perhaps you found something useful and surprising in these terms as I did.
If nothing else, it’s comforting to know that we aren’t alone and that resources are out there to help us.
Keep fighting the good fight, fellow caregivers. You are making a difference.
• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.
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