"Sharing caregiver's experiences" - 9th April, 2011

The monthly caregiver's meeting was held on Saturday, 9th April, 2011 from
2.30P.M. – 4.50 P.M, at conference hall, 1st floor, Millennium Block, NIMS.
This month's topic was "Sharing Caregivers Experiences". The audience comprised family members and ARDSI volunteers.

The session was moderated by ARDSI members who explained the importance of sharing experiences in our day to day life with Alzheimer's and Dementia patients. Members interacted with the caregivers and volunteers and encouraged families to share the experiences and concerns of the caregivers and volunteers.

A common question new caregivers asked was "How much time should be spent with the patient in a day?"

Mr. Guru Raj, an experienced caregiver suggested that more than the quantum of time it is the quality of time spent with the patient that is important. Also taking care of physical needs may be greater for patients with moderate to advanced dementia. An essential approach to caregiving should be – " Don't be as a stranger'. Good caregiving requires time, patience and observation. One needs to be in tune with patient's needs and provide constant encouragement, even with small tasks.

Special care needs to be taken with respect to basic hygiene and toileting. Several common interventions for incontinence were discussed including time-voiding, prompting, responding to physical rather than verbal cues, giving privacy in bathrooms etc. Enviro nmental modifications may be required to help patients identify routes to the bathroom . These include clear passageways with no obstruction, lighting at night, labeling bathroom etc, safeguards in bathroom To reduce caregiver stress, it is essential to have an alternate caregiver who can share the responsibilities. It is important to spend quality time with patient and include outings in the daily/weekly schedule such as visits to the park, temple etc. Patients shouldn't be coerced into doing anything as this will increase their frustration. Rather a loving and supportive environment should be provided to persuade them. He concluded by asking carers to not focus on the tragic nature of the disease but to develop the courage to accept the circumstances and work towards improving the quality of life.

A supportive mode of communication needs to be adopted. It is necessary to remember and recognize that patients are not children and should be treated as adults. Persuasive rather than coercive methods of communication should be used.
One of the caregivers asked about the memory loss of her father, as her father forgetting their names too. A suggestion was provided that although a patient may forget your name, he may still recognize you as a loving family member. One needs to give importance to non-verbal means of communication and not fixate only on the spoken word.

Another care giver shared her grievance as her father is 75 years old and suffering with dementia, and her mother is 65 and unable to take proper care about herself,
as she is the real caregiver. We need to understand scientifically that Dementia is a progressive, incurable disease of the brain that causes progressive deterioration in thinking, memory and everyday abilities. A patient's behavior needs to be understood in light of his/her's diminishing capabilities and also responses to existing environment. Caregiver's need to ask and take additional help to provide
round-the-clock care.

The Programme concluded at 5.30 p.m. with vote of thanks.