Published on: January 25, 2017
by Women’s Brain Health Initiative:
In The Unites States and Canada, about 16 million family members and friends are looking after people with dementia dedicating themselves to a staggering 18.5 billion hours of care.
If you happen to be one of these caregivers, you’re probably not thinking much about the numbers. You’re probably more focused on getting through today, this week, this month, this year. Here are some tips to help you navigate your “caregiving career.”
Caring for a loved one with Alzheimer’s disease or dementia is a risky business. While all types of caregiving come with a fair share of stress, numerous studies indicate that dementia care exacts a particularly high toll on its caregivers. Anxiety, depression, family conflict, chronic fatigue, and poor physical health are just a few of the adverse effects that commonly creep up on the family members who assume this role.
For adult children, the scenario is even more complex. They are more likely to be juggling caregiving with busy careers and families of their own. At the same time, many suffer from intense feelings of guilt over the inherent role reversal of Alzheimer’s and their parent’s progressive loss of independence.
On the plus side, caregiving can be an enriching experience. In Canada, 80% of a nationally representative sample identified positive aspects about caring for their family member with dementia. Benefits included giving back to a loved one, a sense of meaning, feeling needed, mastering new skills, strengthened relationships, and developing an appreciation for life.
Better news yet, positive feelings appear to buffer against depression and poor health. Here are a few additional points to consider, gleaned from research and experts in the field, to help make caregiving more rewarding and lessen the stress.
Make your health the absolute first priority
Family caregivers of people with dementia are often called the ‘second patient in the making’ — and for very good reason. Research consistently shows that they are at increased risk of serious problems such as lower immunity, chronic conditions (diabetes, arthritis, ulcers and anemia), cardiovascular problems, obesity, greater medication use, cognitive decline, and the list goes on and on.
In one study, a daughter caregiver described how she was so exhausted from working by day and caregiving by night that she fell asleep at the wheel and had an accident. In another case, a male caregiver sacrificed so much to care for his wife that he suffered a heart attack and a stroke from the strain. These may be anecdotes but they are supported by quantitative research.
Dementia caregivers are prone to neglecting their own health.
“Keep your health appointments — your mammogram, your physical. And exercise,” says Dr. Laura Gitlin, Founding Director of the Centre for Innovative Care in Aging at John Hopkins University. “You’re not taking time away from your parent. Staying healthy is an important part of your caregiving role.”
What a male perspective can teach you
When it comes to dementia care, women carry a heavier burden than their male counterparts, and not just because the majority of caregivers are female. Women face higher levels of depression, anxiety and role strain than men, and not surprisingly report a lower life satisfaction.
A possible reason for this gender difference is that male caregivers tend to take on the role of care manager rather than care provider. They believe their skills are best put to use on functions like managing finances, grocery shopping and medications, while assigning “softer” direct care tasks to family members and professionals.
Women, on the other hand, tend to take on the more stressful role of care provider. The sheer number of hours devoted to dementia care, with intensity of support growing over time, takes an inevitable toll. Care providers report having to give up pleasurable personal activities and restrict time with friends and family, leading to feelings of social isolation. Adult daughter caregivers in particular may be at risk of compassion fatigue.
Men may be better at preserving their own wellbeing in the face of dementia care. In a recent small-scale study, son caregivers reported that they knew caregiving might affect their health and so they put boundaries on the time devoted to caregiving and the types of care they provided. They also made a concerted effort to continue
seeing friends and participating in leisure activities. By putting in place a network of care helpers, they were able to put their own needs on par.
Create an extended family of care
Dementia caregiving is not a one-person job. Too often the role falls disproportionately onto the shoulders of one person in the family, a spouse or one child, leaving them open to the emotional and physical health risks of caregiver burden.
Family meetings can help facilitate a fairer division of labour and create an environment of support.
More than other types of caregiving, dementia care is rife with family conflict and the perception that other family members are not doing their share.
Honest discussions up front and on-going communication to adjust responsibilities as needs arise may help alleviate some of the tensions.
By spreading the love around, primary caregivers have a better chance at finding pockets of time to take a break for themselves. Whether it affords time for a 20-minute walk or an hour-long coffee date with a friend, this kind of social support improves psychological wellbeing and helps caregivers feel more positive about their role.
Prepare yourself financially
National economies owe a debt of gratitude to family caregivers, who annually contribute $21.3 billion worth of unpaid care for people with dementia in the United States and enough hours in Canada to fill 227,760 full-time jobs.
Unfortunately this care, which enhances quality of life for elders and delays institutionalization, comes at a great financial cost to the caregivers themselves.
Adult children, who are more likely to be employed and at mid-career, may be particularly hard hit.
Many will need to interrupt their careers to look after their parent. Early retirement, turning down a promotion, losing job benefits or giving up work entirely are realities that affect dementia caregivers at a higher proportion than non-dementia caregivers. Inflexible work arrangements and difficulty reconciling the caregiver role with employment have been shown to increase strain and depression.
It’s worth a visit to your Human Resources department to check out what options they might offer. Flexible hours, working from home, compassionate leave, and employee assistance programs might help mitigate stress considerably.
Educate yourself, de-stress and get support
Caregivers should learn as much as they can about dementia after their parent’s diagnosis. There is a tendency towards denial in the early stages, a feeling that “people are overstating things,” or “it’s not that bad.” This is a disease that follows its own trajectory, in its own time. Knowing the types of things that can happen provides caregivers with context when changes do (sometimes suddenly) occur.
There is no sugar coating it: caring for a parent with dementia is difficult, especially as the disease moves into its advanced stages.
Stress reduction techniques are critical and can be as simple as deep breathing, exercise, listening to music, or laughing out loud. One expert advises clients to think about the small things they do in a day for themselves, and then really focus on savouring those moments.
Finally, seek out support from the local Alzheimer’s organization. They help people with all types of dementias, not just Alzheimer’s. They will tailor assistance to your individual needs, include the parent you are caring for in programs, and be by your side for the long haul – best practices are shown to have a positive impact on caregiver wellbeing.
Pssst… Canadians, take note
Residents of Canada have access to several caregiver benefits and tax breaks. Federal compassionate care leave for a terminally ill loved one was extended in 2016 from six to 26 weeks. The government is looking at expanding the benefit to include family members with serious illness in the future, so keep your ear to the ground.
You can also take a protected unpaid leave of absence ranging from 8-12 weeks, depending on your province. In Nova Scotia, caregivers of low-income adults can get a $400 per month benefit. Check with your provincial governments to see what might be available.
Come tax time, Canada also offers a caregiver tax break, which can be easily claimed on Line 315 of your tax return. A StatsCan survey showed that only 3% of people providing care to their parents were taking advantage of this tax credit. Contact the Canada Revenue Agency to confirm your eligibility.
Source: Mind Over Matter
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