Background of Participants
A total of eighteen (18) participants who were all family caregivers and play various roles as mothers, fathers and siblings to dementia patients were interviewed. Most of the participants (12) were married with children and even those who were single, co-habituating and separated had children and other relatives to fend for. Also concerning caregivers’ relationship to patients, it was identified that more mothers were caregivers. Other relationships found were, father, brother, sister, uncle and paid person to do the caregiving job.
Table 1: Demography of Participants
Demographic Variables
|
Frequency
(n=18)
|
Percentage (%)
|
Gender
|
|
Female
|
13
|
72
|
Male
|
5
|
28
|
Age
|
|
30-40
|
4
|
22
|
41-50
|
5
|
28
|
51-60
|
4
|
22
|
61-70
|
3
|
17
|
71-80
|
2
|
11
|
Education
|
|
School dropout
|
2
|
11
|
Primary school
|
3
|
17
|
Junior high school
|
3
|
17
|
Tertiary education
|
2
|
11
|
No formal education
|
8
|
44
|
Occupation
|
|
Farmers
|
1
|
6
|
Traders
|
1
|
6
|
Civil servants
|
1
|
6
|
Private workers
|
6
|
32
|
No Occupation
|
9
|
50
|
Religion
|
|
Christian
|
13
|
72
|
Muslims
|
3
|
17
|
Other religions denominations
|
2
|
11
|
Marital Status
|
|
Married
|
12
|
67
|
Single
|
2
|
11
|
Co-habituating
|
2
|
11
|
Separated
|
2
|
11
|
No of Years spent giving care
|
|
1-5 years
|
10
|
56
|
6-10 years
|
6
|
33
|
11-15 years
|
2
|
11
|
Challenges of family caregivers of dementia patients
The challenges of family caregivers of dementia patients faced were grouped into three main themes; social challenges, psychological challenges and economic challenges. See Figure 1
Social challenges of family caregivers
In this paper we examined social challenges family caregivers of dementia patients face and they different on various societal levels.
Mockery
Pertaining to the social challenges, there are many vulnerabilities that caregivers face in executing their duties. These put a dangerous impediment to their health and makes them prone to various health conditions. Mockery can create a burden and stress on their life and makes them shield from community activities, with little faith of disbelief in themselves.
Some participants view of the society mocking them were expressed as:
‘’ the town people were calling her witch, so we had to vacate the village and settle in Kumasi, because of her condition’’ (Participant 13)
‘’We had to take her away from our hometown because she talks randomly, and it was same with my grandmother. The town people were insinuating our family has been cursed with randomly talking in old age.’’ (Participant 7)
Social victimization
Socially, understanding of dementia has not gone done well with the community members. Some talk negative about the disease and even perceived it to be linked with sorcery. Some participants expressed the alienation and rejection from friends as a result of the patient’s condition.
One participant explained;
‘’With the reaction from family, there is not any problem but most of my friends insist that I should take my wife to her family house, because I have done my part in caring for her. With all the pressure from friends I still do believe that is not right to do because is not her fault for this condition. So, I always become sad of the way my friend behaves and say about my wife. So recently they do not come and visit me again, even with kotoko [A football team in Kumasi] meeting I mostly go alone as we went together always for years. ‘’ (Participant 4)
Lack of social participation
Involvement in societal gathering culturally, is seen as a responsibility and a mandate for every individual regardless of societal status. It there creates a burden when personally someone cannot function in them. The gathering are open spaces where friendship is mended back again and helps improves psychological health. Some also expressed how they had to redraw from certain social gatherings due to caregiving duties;
‘’I am part of the men’s church fellowship and a leader as well but since my wife had the condition, I am not given enough responsibility as earlier on, because most at times I have to ask permission and go see if she is ok, I remember going for men’s fellowship only twice this year. (Participant 7)
‘’I am a vibrant member of the Ruling party’s women’s commission but due to my mother’s condition, I cannot involve myself in the groups duties as I previously used to’’ (Participant 18)
‘’My twin sisters daughter was marrying and I had to be there but due to our mothers condition, I have to sacrifice and be with her at home.’’(participant 8)
Economic challenges
Here it was imperative to assess the economic demands of the caregivers and how it has been achieved.
Inability to work
Family caregivers managing patients with mild conditions expressed they can work within the day but those with patients whose conditions are severe made it emphatic they were not unable to work, and some stated they had meaningful employment until the conditions of their relatives started. The participants expressed their concerns as:
‘’ she was diagnosed with dementia in 2003, I have not been employed since, but it was left with only two years for retirement. I took an early retirement and now we survive on my pension fund and the monthly monies from my children. ‘’ (Participant 3)
‘’ I was a taxi driver but after my wife was diagnosed, I had to stop and take care of her’’
Limited Income
The onset of the disease makes family members sacrifice some employment offers which cut down the income of the household. Some participants reported as;
‘’My mother’s condition is not that serious, so I have a shop in front of our house, where I sell provisions. The shop fetches a little, as we can depend on it for our daily consumption but sometimes the drugs are expensive, but I manage’’ (Participant 17)
‘’For two years now, only my husband provides for us all, I was a trader and supported him. Currently, I am caring for my mother and our family is in serious hardship, since our children are all in tertiary schools and is expensive.’’ (Participant 6)
High healthcare use charges
Participants also mentioned high expenditure involve in hospital evaluation visit, transportation, drugs, scan, laboratory and accommodation.
Some of the participants recounted:
‘’We have registered the national Health Insurance, consultation fee is free for 70years and above, but for scan, laboratory and Drugs we pay, which is the most expensive ‘’ (Participant 4)
’I have spent almost all my pension funds on my wife’s condition. The condition has taken a heavy toll on my finances’’ (Participant 3)
Inability to buy drug
The cost of drug for dementia care is expensive and very difficult to buy since most of the inhabitants of the country are characterised as average income earners.
‘’Her condition is draining me, you can buy one drug for 350GHC (68 dollars) and is not the only cost. ‘’ (Participant 18)
‘’I remember she could not sleep, so we had to buy a certain medicine for her, and it was roughly around 450GHC (79 dollars)
Lack of financial support
The study reported that most of the dementia patients could not access any social intervention policy programme to help them cut down cost.
Some of the participants expressed as:
‘’I went to the office of the social welfare at the hospital and wanted to register my mother for the Livelihood Empowerment Against Poverty Program (LEAP) and the Disability Common fund program, but they said she cannot enjoy of the policy, since they did not capture dementia patients in the beneficiaries’’
Psychological challenges of family caregivers
Caring for the dementia patients may bring some psychological interruption for the caregiver and this anomaly normally goes unnoticed. Family caregivers experienced a lot of psychological stress and agony. Participants mentioned the following psychological challenges; stress as a result of finance, shock and sadness, emotional trauma, inability to sleep.
Emotional Trauma
Here it comes as a result of dishearten event that family caregivers faced as a result of their duties. Some participants recounted that:
‘’Emotionally, I am not off myself, without the sickness, he used to assist me by selling the farm goods we produce but now I must do everything by myself. When it is getting to farming day, I start to think of him and keeps mute the day before, because it is worrying to know he is here physically but not here in strength with me. ‘’ (Participant 15)
’Recently, he defecated and urinated immediately after cleaning him, which made me very angry and talked for hours. I checked my blood pressure on the next evaluation day and it was high, which I think he is the cause” (Participant 3)
Stress
Events and happening that makes family caregivers feel frustrated and angry. Some of the participants reported as;
‘’The drugs are very expensive, even now the drug they gave us for her during our last visit, I haven’t bought them. I must come to the village and see if my cocoa has yielded and sold for money, it is frustrating to see no improvement but still we are buying drugs. ‘’ (Participant 12)
’He easily gets angry and it gets worse when he has not eaten. Such situation is very difficult to deal with as a caregiver, sometimes you become motionless. Personally, I have been thinking a lot since he was diagnosed with dementia. ‘’ (Participant 9)
Inability to Sleep
One helpful event for the body and mind is getting enough sleep. But this is not the case for family caregivers of dementia patients, since you must be on alert for any noise you hear in the house. Some participants expressed as:
‘’Personally, it is difficult to get sleep because he can wake up at any times and would like to involve you in a conversation but not meaningful’’
‘’One night we did not close the main gate and around 2am when I woke up, she was not around, we must search the whole town and found her around 5am, we could not sleep again.
Needs of family caregivers
From the analysis the research identified various needs caregivers of dementia patients. The main needs of the family caregivers were categorised as Physical, Social and Psychological needs. Theses main themes also have sub-themes which the studies were captured under.
Physical needs of family caregivers
The research participants were asked some questions that made it possible to get a concise feel of their physical needs; some daily activities they perform as family caregivers.
The caregivers explained patients who had mild conditions assisted in the caregiving like their oral care, physical cleanliness of the patient and feeding but, patients with severe conditions made it tough for caregivers, as they must perform almost all the activities. The activities performed by caregivers were different depending on the patient’s conditions and how severe or serious the condition of the patients. The attention given to the males is more than the females as most of the males were reported to be aggressive because they become disoriented, having difficulty recognizing friends or family members, identifying what time or day it is, or even misplacing items and accusing others of theft whereas the females were antisocial due to the mood swings.
Personal Assistant
Some of the family caregivers expressed their major need in respect to the duties they perform daily would be a personal assistant. Some participants recounted:
‘’When she had dementia, she could not do anything. In terms of bathing, brushing and other things is done by me. She starts by talking to herself and difficult to talk to her. In terms of daily living is very difficult but my son take care of her also. Is not easy, we have been married for 43 years and I tell you that commitment of ‘’for better for worse’’ is not easy.’’ (Participant 6 )
‘’We have a house help who is being paid to help us cook, bath and dress my wife. My wife cannot do anything for herself as she is totally incapacitated’’ (Participant 7)
‘’personally, for now I need someone who can assist me in taking care of her, is never easy being the only one’’ (Participants 17)
Transportation Assistance
Cost involve in taking the dementia patients to evaluation is very enormous and it is very important to get a vehicle to help ease the cost. These was a major need for some family caregivers. Some participants are expressed:
‘’for now, a car to convene us from here to the hospital, car fares are quite expensive, especially, I have to rent a car to and from the hospital on days of evaluation’’
‘’because of transportation fare to and fro the hospital instead of two weeks visitation, we normally go on a one-month interval’’
Physical attachment from Spouse
The married family caregivers lamented on the nee to have physical touch from their souse since they are depriving their partners their rights according to scriptures. Some had faith and prayed their spouse would not cheat due to these situations.
‘’I told you my physical needs is to get affection and attachment from my husband, is been long we had fun and I want that physical touch from my darling’’
‘’I am keeping faith, my husband does not take any mistress and have fun with her, is been long I saw her, he lives in the norther part of Ghana 12 hours by bus’’
‘’I cannot remember the last time, I had intimacy with my husband, I need that feeling as a woman, but caregiving duties would not give me the time to visit her.
Inability to eat
Due to the caregiving roles, many family caregivers engrossed themselves in the duties and cannot have enough food to eat. Some participant expressed as;
‘’Physically, for hours I haven’t eaten or drank any water, I move from doing one thing to the other, I don’t not intentionally deprive myself from food and water, but the duties are many, I think a helper would be ok’’
Social Needs of Family Caregivers
The study examines the social needs of family caregivers, the social activities they engage in aside giving care and the social challenges they encounter as a result of giving care.
Social gatherings like funerals, engagements and weddings, church services, meetings, association meetings etc. were the social activities listed as caregivers used to attend. Conversely, almost all the participants expressed that, their participation in social activities have slowed down since they became family caregivers to their dementia relatives. Also, time was the major factor, family caregivers expressed as the force behind their inability to fully participate in social activities. Another session of the participants had a laid down criterion of their schedule time as to when and where to attend the social gatherings and the time to return.
Social gathering involvement
Some caregivers expressed the need to be involved in societal gatherings since culturally it is a must to partake of such events like wedding and funerals. Some participants recounted:
‘’I can’t remember the last time I went to a funeral or wedding; I cannot leave her here by herself and is difficult.’’ (Participant 6)
‘’At first usually once a month I have drinks with my friends but for three years I cannot interact with anyone, because I cannot go and leave her indoors.’’ (Participant 11)
‘’When I want to go out, I leave her in the room locked so that he doesn’t go anywhere. Especially when I am going to the bank for money, our children usually send money to us. ‘’ (Participant 10)
‘’ I want to get my social life back, going for occasions like wedding, funeral, parties, currently, all my clothes are locked indoors’’
‘’I cannot remember the time I sow new clothes for a gathering, I don’t go out anymore, is hurting’’
‘’Someone saw me and said, I thought you have travelled, I do not see you at our women’s fellowship anymore, I was speechless, because I didn’t want her to know my mother’s condition’’
‘’You know seeing friends and people, makes the soul happy, socially am out of the game now, I want that freshness in my life again’’
Societal Concerns
Some of the caregivers wanted people from their neighbors and family to visit them and even have a chat about their struggles with them. Some participants reported as:
‘’I think a good education about the condition should be given to us the caregivers and the society in general, because the society must understand the condition more.’’
‘’If people would visit me at home and at least let’s chat for a while, I think will help me close that gap of being socially ideal’’
Psychological Needs of Family Caregivers
The study examined the psychological needs family caregivers of dementia have in relation to providing their caregiving duties.
Free time to relax
Some participants expressed the need to find time within their duties to relax their mind and body, to lease any stressful events.
Some expressed as:
‘’Mentally, I think is very difficult, caring for him and his behavior, I have to deal with a lot and is stressful, I should be a free time from the care giving duties and resume later, I think my emotional state will improve massively’’
‘’The duties are demanding and the only want to release some stress and trauma is having time to relax, which is sometimes difficult to get.’’
Faith assurance
‘’My faith is risen whenever our pastor comes around, I think is a good emotional state for me, but he comes only twice a month, think should be more, so I have good emotional balance’’