“Family Dementia Care -Who Knows What, Will Happen?”

Family Dementia Care; what do we know? Well, though it is true we don’t have a crystal ball to look into the future, we do know that a progressive, degenerative disease will worsen. We also have an idea of the time frame. Alzheimer’s disease and other dementias tend to go through mild, moderate and severe stages. The disease process can last around 15- 20 years. Everyone experiences the disease and its symptoms a bit differently. However, with dementia, whatever the actual cause and type, the person with the disease will experience a decline in memory, cognitive abilities and physical abilities over a number of years.  With this information, some planning can be done for family dementia care.

Spouses Approach Dementia Care Differently

In general, women or wives tend to carry a greater load than do men or husbands. True, there are many more women caregivers to start with and they experience higher degrees of depression and anxiety than men. The male approach to caregiving validates a gender difference. Men tend to view and act in the role more as a Care Manager instead of Care provider. Husbands and sons more often will view and use their skill set which includes managing finances, shopping and medication management while assigning direct or physical care to other family members or hired professionals and aides. Women conversely tend to take the more stressful (emotionally and physically) role of providing the hands on care. This can be direct help with bathing, dressing and spending time with their loved one who has cognitive impairment. Women will more likely give up their own activities in order to provide the direct care. Adult daughters in particular are targets of “compassion overload”.  Family Dementia Care can remain within the family or better yet, shared with volunteers, Day Care programs, hiring an aide or a move to a Memory Care Center. When a family comes together, exploring payment for hiring a trained caregiver makes a lot of sense.  If your elderly parent has Long Term Care Insurance, it is useful to check with the insurer regarding details about the policy. Veteran’s Benefits, Medicaid, Reverse Mortgage and community based programs may defray some of the costs of hirng in home care.  It is also recommended to check with your accountant for any tax breaks for family caregivers. Usually a family will be able to pool some money for a few hours of respite care for the primary care person.

Gender Roles Carry Through Caregiving

In the United States in particular, gender roles remain entrenched to a high degree. Men are gatherers and women are caregivers, both being groomed from early childhood. Even with evolved relationships and understanding that both men and women can do the other’s tasks competently, men seem better at setting boundaries and women will take on the added responsibilities. Some studies show that adult sons are better than their sisters at realizing the weight of caregiving over time can affect their health adversely so they are better at managing their time and tasks they will do. The men also were more successful at seeing their own friends and doing leisure activities.  They put a network of caregivers in place so that they could better maintain their own schedules. Women tended to forgo more of their leisure time and increase their caregiving availability and schedule.

Doing Their Share

Like in any relationship, it isn’t truly 50-50 but a desired balance is needed to maintain the situation and everyone’s sanity. We know primary caregivers are prone to putting off their own medical care and health needs. Each primary care partner will do well to reframe their commitment to being a good care provider by taking care of their own needs first. This is health and social needs. Taking care of an adult who slowly requires more and more help and attention is not a solo job. No one person can sustain doing it all for a long period of time before cracks in the plan begin and then fractures till the primary care partner is in pieces. Local family will usually be doing more of the visiting, escorting, shopping and cleaning than out of state family/siblings.  The local caregiver needs more support — emotionally, financially and in scheduling. Have family meetings, involve a professional if need be,  a Family Mediator or Care Manager in order to streamline a Family Dementia Care Plan with a division of tasks spread to each family member.

Basic Planning for the Inevitable

Certain things should be done while the person is still in the very early stages of mild cognitive impairment or memory loss but able to make decisions and contribute to family discussions. A meeting with an Elder Law Attorney and a Financial Planner are a must to name Durable Power of Attorney, End of Life Wishes, protect assists and review strategies should placement into a care community be needed. Having the legal documents and a financial plan in place will give everyone a sigh of relief and peace of mind, even as plans change. The earlier into dementia, Alzheimer’s disease, Parkinson disease, M.S., ALS and other neuro-degenerative diseases the family can come together to discuss and plan, the better for all involved. Social Workers and other Geriatric professionals are extremely helpful in lay out what to expect, benefits and services available  and overall planning for who will be responsible for what. One sibling can take on the legal/financial details, another medical and if there are other siblings, all will be best served to work as a team (even with sibling grievances) to discuss visits, breaks in care, how to support the well parent and thinking ahead of the disease. All of this takes time and understanding so you may view it as a negotiation to start with. Lay out terms and options. If there is not agreement as to the best plan or the well parent is unwilling to give up control, accomplish what is possible and seek out a professional when needed.