For many, when they’re diagnosed with Alzheimer’s, they first think, now what? Of course, they’re often concerned about the progression of this disease, but in most cases, they think of their loved ones. How will their family and friends cope with the news? What impact of Alzheimer’s have on the ones they love the most?
Alzheimer’s isn’t a disease which is easy to deal with by any means. There is no cure and based on individual differences, there are a lot of unknowns. Some respond to certain ‘treatments’ better than others, leading to a lot of what-if scenarios. This is why an early diagnosis is such a positive experience.
Being told you have Alzheimer’s is frightening, but as long as you are still functioning at a fairly high level, you can help your family and friends plan for the future. That way, the disease becomes less of a burden for those involved. It’s awful to describe this disease as a burden, but for those who live it, they understand that Alzheimer’s is challenging for everyone involved.
A Common Disease That’s Tough to Swallow
With so many individuals now suffering from Alzheimer’s, we have become somewhat desensitized. Until we are directly or indirectly affected, it’s hard to understand how traumatic a diagnosis can be. For family and friends, they’re often not prepared for the journey ahead, as the relationship with their loved one changes.
Family and friends may be involved in a number of different ways, as some are more hands on than others. For those who are full-time caregivers, they represent a large population of forgotten victims. Often thrown into this role without much experience, caring for someone with Alzheimer’s is overwhelming — especially when they’re someone you love.
As stated in a key study, published in the Western Journal of Nursing Research, 103 family caregivers were examined. Based on descriptive expressions, caring for a family member at home with Alzheimer’s disease, was experienced as:
- “Being immersed in caregiving”
- “Enduring stress and frustration”
- “Suffering through the losses”
- “Integrating Alzheimer’s into our lives and preserving integrity”
- “Gathering support”
- “Moving with continuous change”
- “Finding meaning and joy”
Considering approximately 15 million North Americans currently provide unpaid care for an individual with Alzheimer’s, it’s safe to say that friends and family members are overwhelmed. Although some of these individuals are friends and even healthcare personnel, 80 percent are family. This is resulting in caregiver burnout and the diminishing health of those involved.
As reported in a 2011 review, of female Italian caregivers, it was found that 56 percent suffered from a physical illness and 32 percent suffered from a psychological illness. From anxiety to depression, poor wound healing to hypertension, caregivers are often subject to adverse effects, based on this highly stressful role.
Pull Together to Reduce Overall Burden
If your loved one was recently diagnosed, you may be experiencing a range of feelings — grief, anger, fear, and even guilt. It is natural to experience this roller coaster of emotions, as you will be responding to loss, as well as future full of unknowns. This is why it’s imperative to pool your resources, asking for help.
As a family, sit down with all members, as well as close friends and ask — what is everyone willing to do in order to help their loved one and each other? Many families skip this step, which is critical in terms of idea sharing and planning. When everyone is involved and informed, more can be done as a collective unit.
If ten people share the responsibility, you can imagine how positive this will be in comparison to someone who takes on 100 percent of the responsibility themselves. It will be night and day — both for the caregivers and the individual with Alzheimer’s. When there’s less stress and greater well-being among caregivers, this is represented in the quality of care that’s received.
At the end of the day, informal caregivers need greater levels of support. As stated in a review, published in the International Journal of Integrated Care, it was clear that support inventions are small and inconsistent between studies. Some of the key findings included:
- When aiming to reduce depression, anger, and burden, respite care can be helpful
- Intervening at the individual caregivers’ level can reduce burden, stress, role strain, and depression.
- Group support increases coping ability, social support, and knowledge.
- Technology-based interventions can reduce caregiver burden, anxiety and stress.
Overall, researchers concluded that support packages need to be tailored to the individual caregivers’ social, psychological, and physical needs. Meaning, this level of intervention will require a high level of collaboration and coordination between all parties.
If you are currently a caregiver within the United States, there are resources and support groups available. If you would like to seek advice or simply open up communication with others in the Alzheimer’s community, the Alzheimer’s Association offers access to an online community. Remember, you’re not alone in this battle — there is support and assistance available.