We recently sat down with Patricia Callone and Connie Kudlacek, co-authors of The Alzheimer’s Caregiving Puzzle and asked for their thoughts on caregivers and the role they play when supporting persons with Alzheimer’s disease.
Demos Health: What do loved ones need from their caregivers as Alzheimer’s progresses?
Answer: Loved ones with dementia need to receive person-centered care that nourishes their individual “enduring self” throughout the progression of the disease. Giving care to persons with dementia has many dimensions:
- There are the physical acts and deeds done to take care of the mind, body, and spirit of the loved one.
- Then there are the acts of compassion and love that treat the person with dignity and respect for who she/he still is – even though the progression of the disease changes his/her communication, memory, behavior, etc.
- The goal is to have both dimensions – compassion and love for “the enduring self” – working at the same time as the dressing, feeding, bathing, playing games, etc., is going on.
After the diagnosis of a dementia, a discussion about what the person with the disease expects for his/her care needs to be held as soon as possible. Loved ones need to be part of the conversation – expressing their wants and desires. Family caregivers need to offer them dignity and respect for their opinions on physical, spiritual, financial, legal, and daily caregiving options. However, promises about specific caregiving throughout the disease progression should not be made.
Persons with the disease need to be able to trust that their caregivers will be doing the best they can concerning their total care – mind, body, and spirit.
Demos Health: The book outlines three caregiving styles. Can you tell us about these?
Answer: Generally, the first caregivers of persons with Alzheimer’s disease are family members. Family members are not trained to take care of persons with dementia and many family doctors have not had the most up-to-date education about resources for the family. The Alzheimer’s Association has many resources and should be consulted early.
Caregivers go through transitions and stages in caregiving right along with loved ones who go through transitions and stages of the disease progression. Here is an overview of how the authors in this book explain the caregiving stages.
- YOU Stage (Loved one has “power”): In the Early-to-Mild Stage of the disease the person with Alzheimer’s is generally functioning quite well and can make decisions for him/herself. The loved one with the disease has “power” to make decisions as long as his/her safety and/or the safety of others is not compromised. The loved one usually is still driving, shopping for groceries, etc. Because Alzheimer’s disease progresses slowly, it takes 2 to 3 years for significant changes to begin.
- WE Stage (Loved one shares “power”): This is usually the Moderate Stage. The loved one is not able to take care of him/herself without help. Decision-making is hampered and for safety’s sake the primary caregiver begins to carry out the plans stipulated by the loved one at the beginning of the disease progression. Usually the loved one is not driving and making financial decisions. Other physical ailments may come into the picture as the body becomes more frail. Loss of hearing, eyesight, mobility – make caregiving for the dementia aspects of the loved one more complex.
- I Stage (Caregiver has “power” to carry out wishes of loved one): This stage is usually the Severe Stage of the disease. In this stage the loved one becomes dependent on primary and secondary caregivers. Again, the loved one deserves to be treated with dignity and respect. The lack of communication and overall body control is being caused by the progression of Alzheimer’s disease across the brain. Again, the wishes of the loved one should be carried out as best as possible. Family caregivers need to use resources in the community that fit the needs of the loved one and family.
Demos Health: Can you share with us a few of the most effective and constructive caregiving practices?
Answer: Here are some of our main philosophies concerning caregiving for persons with dementia that we have found most effective:
- Caregivers need to be aware of the changing needs, desires, and abilities of their loved ones who have Alzheimer’s disease throughout the disease process: the Early-to-Mild, Moderate, and Severe Stages.
- Dr. Roger A. Brumback, co-author with all three of our books, always taught us to “Nurture What Remains”© – to concentrate on the areas of the brain (skills and abilities) that still remain, even as the disease progresses. Thus, our concentration is on nourishing the functions that remain throughout the disease. All co-authors believe the “enduring self” remains – mind, body, and spirit – and deserves continued nourishment.
- Caregivers can learn to become “detectives” and continue to acknowledge what the loved one can still do and enjoy. One person may continue to love the outdoors, another art or music or eating favorite foods, or playing long-loved games. Finding those skills and abilities and nourishing what remains can be fun and delightful for those with the disease and caregivers.
- Keep caregiving as simple as possible. Try not to hurry when giving care. Enjoy the moment.
- Learn about new research and caregiving tactics that are being developed all the time. Think about how you would like to be treated and do the same for your loved one.
- Enjoy life to its fullest within the boundaries given to you.
No one book is able to give caregivers “the road map” to follow during the caregiving process, but experienced caregivers and healthcare professionals can offer their knowledge and resources to help others. Note: Attention also needs to be paid to the health of primary and secondary caregivers. The role of caregiving has changed over the years. Today, the primary caregiver is the person who makes all the connections with doctors, nurses, social workers, care companions, other family members, and financial and legal professionals.
Demos Health: As more and more resources are needed, more time and emotional energy is expended by caregivers. What are a few health practices a caregiver can start implementing today?
- Keep focused on your goals. Your goals are to give the best care possible to your loved one and to sustain and care for your own health – mind, body, and spirit. Every caregiver needs to learn a balance in order to attain both goals.
- Understand yourself as a caregiver. Your needs will change, as will the needs of your loved one. Learn what you can do and what you cannot do. Seek resources for yourself and your loved one. Find friends and family members that nurture you. Have fun!
- Try to understand your loved one. Nurture what your loved one can still do. Be the best “detective” possible in finding what your loved one can still do and enjoy.
- Keep communication open at all times – with other family members, caregivers, and health professionals.
- Strengthen your spiritual base. Plan time just for yourself – time for reflection, fun, and companionship outside the family.