Socio-Demographic Characteristics of Participants
The study involved 30 participants, 22 were caregivers and 8 were opinion leaders.
The participants’ ages ranged between 20 and 78 years, with 11 males and 19 females. Opinion leaders were catechists, local councilors, herbalists, and a pastor. 28 participants practiced farming for a living, one was a builder and one was a teacher.
Two major themes emerged: 1) Informal support were available to PWDs and 2) The perceived usefulness of the support.
Theme 1: Informal support provided in the homes
This theme emerged from eleven categories namely, supporting and reminding of activities of daily living, reminding PWDs to attend social and family activities, creating a socially connected environment, enabling accessibility to medical care, assisting with occupational activities, recovering misplaced items, informal counseling and guidance, spiritual nourishing, providing of herbal remedy, looking for financial support and sourcing carers from other families.
Supporting and reminding of activities of daily living
Caregivers explained that they supported PWDs by reminding them of the day to day activities. Most of the participants talked about cooking for them, bathing them, reminding them to take their medicine, washing their clothing and dressing. This was evidenced in the statements below;
“I bring for him food to eat, bring him a jug of water to use for bathing and also collect his clothing for washing. I have to keep him safe and also remind him of something should he forget.”
“I help fasten buttons for him or if he wears a shirt inside-out, I help him wear it the right way.”
“I’m the one who cooks for him… I do his laundry, lay his bed and also cook for him food. Things like that.”
And also helped them to search for misplaced items leading at time the caregivers to donate the replacement for the lost items. The caregivers also described that they reminded the PWDs to stay away from the sun as PWDs sat outside and forgot to move to shaded areas for protection from noxious sun rays and dehydration. This is evident in the statement below;
“..I remind her when she forgets, when she misplaces something I tell her to take her time to search for it this helps her to find what she is looking for and even help her search for it or even at times I give her my own to stuff to use if she totally fails to get hers.”
Reminding them to attend social and family activities
Participants explained that they reminded PWDs to attend social activities since they forgot to do so. Whenever there was a social activity and gathering, the caregivers would go with PWDs and attend with them burials of deceased relatives, wedding parties, church services, going to the market as they forgot the market days. This was expressed as below;
“…if there is a party amongst the family. I tell him that today is the day of the party and he should go attend it...”
“Another thing that I usually do for him is reminding him on the days of the market…”
“.. She usually forgets by the next morning what was agreed on a day before…especially the days of the savings groups. I usually remind her of those days when meetings are held. She can never remember them…”
Creating a less isolated environment
The caregivers talked about keeping company for PWDs to decrease their isolation and the feeling of not being loved. The caregivers comforted them during that time because PWDs thought they were bewitched. Moreover, caregivers ensured that there were batteries in the radio as they often used radio broadcasting for prayers since churches were not easily accessible for PWDs. This is evidenced as below:
“..as for church he no longer goes there that he has backache however he is always aware of Sundays because he listens to Radio Maria. He prays from the radio…”
“I normally buy him batteries that he uses to listen to the radio, buy...”
Enabling accessibility of medical attention
The caregivers also explained that they assisted the PWD to easily access medical attention by inviting health workers home whenever the PWDs were unable to go outside for their medical visits as well as escorting PWDs to the hospital and keeping their medical forms for easy reference to their medical history. Caregivers also helped reminding PWDs to take their medicine as quoted below:
“..I also give her company by telling stories with her and also make sure she gets treatment when she is in need...”
The participants also shared the experience of these people with having lost their way and end up taking different routes such as going to the hospital for medication and they divert. These are evidenced as below;
“…For instance today I had to escort her to the health center because I knew if she went alone she would not make it and she would even disturb the health workers.”
“…I always tell her how the drugs were prescribed to her. I remind her of the different schedules she is supposed to take them.”
The statements collected further showed that the caregivers invited health workers for to the homes of PWD for medical examinations when the PWDs were unable to go to hospital.
The caregivers also explained that the children of PWDs took the PWDs whenever they were sick. The caregivers of these people notified the children who assisted in the transfer to the hospital for treatment. The caregivers also explained that they kept and supervised PWDs on taking medicine whenever they were sick to avoid mixing up the medications or taking accidental overdose.
“…I always tell her how the drugs were prescribed to her. I remind her of the different schedules she is supposed to take them.”
Assisting in occupational activities
The caregivers described that PWDs could no longer carry themselves to the gardens or to the farms thus their caregivers assisted in taking the items of the PWDS to the market, growing food for them, harvested and left some harvest to feed on as evidenced in the following quote:
“….he has land but he doesn’t remember all of them. I am the one who goes there and takes care of the land so that (baby making noise) I grow crops and we get what to eat.”
Recovering their misplaced items.
Caregivers explained that they assisted the PWDs recover the misplaced items due to forgetfulness as evidenced:
“.. when she misplaces something I tell her to take her time to search for it this helps her to find what she is looking for and even help her search for it or even at times I give her my own to stuff to use if she totally fails to get hers.”
They further explained that the grandchildren and neighbors also helped them search for the misplaced items
Informal counseling and guidance
Church leaders explained that they kept an eye on PWDs in places of worship as they tended to act contrary to the scheduled programs during worship and they offered them counseling both in their homes and at church. This was evidenced as below:
“..I usually offer them counseling because I notice them in their situation.”
They further explained that charismatic committees were in place and groups were trained on how to counsel and guide the PWDs as quoted below:
“..we have charismatic at church where we are usually trained on counselling so when someone tells you about such a situation we try to counsel them so that they feel at home…”
The church leaders also explained that there were ushering groups that assisted the PWDs whenever they went astray. These designated groups assisted them during prayers to keep orderly as expressed below:
“..in our church we have ushers who always are on the look of making sure there is order in church and they usually help such aged people with dementia whenever they are confused and acting on the contrary. “
The caregivers pointed out that that the church leaders provided spiritual nourishing as they visited PWDs to pray for them, preaching about their problem and bringing the holy Eucharist to their homes when they couldn’t make it to church for prayers as evidenced below:
“…. those ones do. The Charismatic usually comes to pray and pray for him. The religious leaders also offer him the Eucharist here at home. If he has enough energy, he gets to go to the church and pray.”
Providing herbal remedy
The traditional healers and general herbalists explained that they provided the PWDs with specific herbs to curb dementia. They stated that some herbs were used as salt baths and others were ingested. The traditional healers explained that before the herbs were given to the PWDs, words are whispered when the potion is mixed for the PWD to use as expressed below:
“….I look for medicine that I give them and the other one is for bathing. That’s my secret, when I prepare for them medicine it is up to me to tell you how to use it…. because there are some words I have to mention towards the medicine I give them.”
Finding financial support
The caregivers identified children and grandchildren of the PWDs as their financial supporters. Most of them stated that PWDs’ children always came to visit and left them with some money to buy basic needs and brought items such as bread, sugar, salt and soap as expressed below:
“…. she has her brother who usually comes to check on her. He usually brings her some beans when it’s the season or leaves her with some money to buy soap.”
Sourcing carers from other families.
The caregivers described that younger relatives, grandchildren and daughters-in law of the PWD, were sent to stay at home. The grandchildren also held conversations with the PWDs in their free time while at their homes so the PWDs did not feel isolated and less valued. These were evident in the following quotes:
“..I also give her company by telling stories with her…. “
“…for example his sons and grandchildren... sending them for a plate in the house they may bring it especially (points at the grandson) that boy who stays with him in the house.”
Theme 2: Perceived usefulness of the support.
In relation to this theme, the categories included happiness and feeling loved, fulfillment, peace of mind, as well as relief and occupation.
Happiness and feeling loved
The caregivers stated that whenever children of the PWDs visited them and supported them financially, PWDs felt happy, loved and cared for even when the children were not staying with them as one exclaimed;
“I see him become happy for example when he sends him money for treatment he comes back smiling and happy saying “my son has remembered me.”…..”
“He becomes happy when he sees people look out for him, he doesn’t get to suffer…”
Caregivers described that whenever they provided PWDs with daily support in cooking for them, helping them dress appropriately, washing their clothing and preparing for them water for bathing among others, PWDs expressed fulfillment and they did not have to struggle with the undone and forgotten house chores
This is evident in the quote below:
“He doesn’t suffer with cooking or tilling the land because we are the ones that do it for him...”
“…he feels great in his life like when someone grows crops for you because you’re unable to do so you feel good so he also feels good if he needs something and they bring it, life remains good…”
A church leader explained that the PWDs expressed satisfaction as they stopped worrying. He also pointed out that they also guided their caregivers oh how to assist them in their homes and this counseling was helpful and yielded as evidenced in the quote below;
“…it always takes time for such people to come back for assistance after offering them counselling; so that helps.”
Peace of mind
Caregivers pointed out that when they held conversations and shared experiences PWDs had peace of mind with less worry given that they had people they counted on in the home as evidenced below:
“….as you know when someone grows old, she behaves like a child eeh! So sometimes she appreciates (Laughs a bit). I kill boredom at home, I give her company, we tell both old and new stories and this makes her feel that she has people at home.”
Caregivers stated that PWDs were relieved of the hustle of endlessly looking for their misplaced items and not finding them. Having grandchildren and caregivers search for the misplaced items was always a point of relief as evidenced below:
“..i t helps her in a way that for instance when she is looking for something and they tell her where it is she is relieved from the hurdle of searching everywhere.”
“….she becomes happy because she is aged and this helps her get back to her normal moods and it relieves her.”
Herbalists also explained that they gave PWDs herbs medicine for dementia and they were relieved since there was a subjective perception that they were healed from forgetfulness. This was evidenced in the quote below:
“There are those you can give herbs now, they'll take them and become okay after a short while and if they continue to use them, they are healed.”
Caregivers explained that they kept the PWDs busy by turning on the radios when they were away and for those that could not make it to church they also listened to radio Maria and followed prayers on the radio. This is evident in quote below:
“I normally buy him batteries that he uses to listen to the radio…”
The caregivers also explained that they went with the PWDs to the garden to assist them and in so doing kept them busy rather than left at home to think about anything. They said that it kept the PWDs occupied as stated below;
“..In his condition, when he becomes busy with the farming, he will be occupied. He won’t have time to think about things that will disturb his peace of mind but rather focus on his garden. If we don’t give him that, he gets uncomfortable when he’s here.”