Sunday, May 28

Alzheimer’s Q&A: Enlist ‘tour’ guides to navigate caregiving journey | Entertainment/Life

What is the “Accumulation phase” of caregiving?

Whereas the “Beginning” phase of caregiving had much to do with the “packing of the suitcase” of acceptance and preparation for the Alzheimer’s journey, the second phase, “Accumulation,” is like arriving in a foreign land and purchasing lots of souvenirs. The caregiver, carrying the heavy luggage already, is trying to get his or her bearings, to learn the lay of the land per se, to grasp everything in front of him of her or him, and to understand the language of Alzheimer’s disease.

This phase is characterized by the simultaneous deluge of services, agencies and programs offered to the caregiver. In addition to caring for his or her loved one, the caregiver is organizing papers, forms and contact info, applying for services, coordinating appointments, scheduling meetings, assessing eligibility criteria for programs, meeting with health care professionals in person and by phone, and filling in all the gaps in care. Feelings of frustration, confusion and not knowing where to turn seem to thwart caregivers from reaching out for professional guidance frequently at this phase and they get lost in this unknown and foreign terrain. Meandering through all the Alzheimer’s disease resources and support services can be daunting, but caregivers can gain a greater understanding and knowledge of the disease by contacting community organizations and health care professionals that can serve as their confident and trusted “tour guides” in this unique Alzheimer’s journey. Local and national Alzheimer’s organizations, Councils on Aging, geriatric case managers and social workers all can offer the right directions for care, to set short-term priorities and to recommend ways and contacts for long-term planning. Additionally, caregivers can find emotional support through these agencies and professionals. Gaining knowledge of the type of dementia, such as Alzheimer’s, vascular dementia, or dementia with Lewy bodies, can help caregivers cope with the various facets of the disease process.

Navigating through this “foreign” disease process takes time. Gaining knowledge, getting resources and joining support groups are all ways for the caregiver to become more confident and comfortable in the new tasks and responsibilities that accompany the journey. Adapting the environment for the loved one is necessary not only for safety reasons, but also to preserve the health and welfare of that individual. For instance, safe proofing the home by removing tripping hazards, increasing the lighting in strategic areas, having proper locks on doors and windows, placing safety locks on stoves and ovens, and removing all hazardous materials and firearms can ensure the protection of the affected individual and lessen the risk of major falls or accidents.

Developing and staying consistent with daily routines is essential in helping the affected individual cope with cognitive impairment. Regular routines are stored in long-term memory and since dementia typically affects short-term memory first, routines often remain understandable and familiar usually through the middle stages of the disease. Caregivers can engage their loved ones in familiar activities that they enjoy and encourage participation in everyday tasks, such as household chores, cooking, gardening, etc. Keeping the individual active for as long as possible can reinforce a sense of independence, in addition to building self-esteem and promoting well-being.

In the accumulation stage, caregivers have numerous opportunities to gain a greater understanding of this new environment of Alzheimer’s disease, and the more they can learn, the better they will become accustomed to all things “foreign” in caregiving.

Questions about Alzheimer’s Disease or related disorders can be sent to Dana Territo, author of the upcoming book “What My Grandchildren Taught Me About Alzheimer’s Disease,” at

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