Mrs A and her family, current experience - Mexico

Mrs. A is in her 70s and lives with her husband in a small village in a rural area. Mrs A’s daughter and her family live nearby. Over the last year her family has become increasingly worried about Mrs. A, as she keeps losing things and puts items into odd places. A friend has told the daughter that Mrs. A had been wondering in the village and seemed a bit lost. The daughter is worried about what people may think or say about and how they may react to her mother. Mrs. A used to have a very neat house and looked after her appearance. She also helped her daughter with the children. Over the last few months Mrs. A seems to be no longer interested in these things. Mother and daughter used to have a good relationship, but recently there have been a number or arguments. The daughter is thinking of taking Mrs. A to the community health centre, but she knows that her mother does not like to go there.

Is highly likely that due to lack of knowledge about dementia, about cognitive decline, or the association of disruptive behaviours with dementia, this would be considered part of a normal ageing process. The daughter, however, feels something is not right and decides to take Mrs Aurora to the community health centre. It is unlikely that they perform any diagnostic tests or screening at the community health centre, as rural health posts rely on basic health teams, usually a General Practitioner and a nurse, with no training in dementia, and with very limited resources. Health professionals in rural posts do not have any training in Geriatrics, Mental Health, Neurology or any other speciality that would allow them to conduct cognitive tests, and other professions such as Psychologists would also not be available. In consequence, the most likely scenario is that the GP runs a general check-up to identify if Mrs Aurora has any other possible health problems (such as hypertension) and if needed, prescribes some medication to manage such chronic conditions.

Regarding the possible cognitive decline/dementia, the conditions/problems would likely be diminished, and the daughter is asked to be patient and “go with it”. Private services to consult a specialist are not available as they are located in large urban areas, so Mrs Aurora and her daughter would not have any further options in their rural community to get a diagnosis nor any support with managing the illness. Unfortunately, even when the dementia progresses and the situation deteriorates, the most the GP will be able to do is keep an eye on Mrs Aurora, but not much in terms of managing the illness and symptoms. By the description of the case, it does not seem that Mrs Aurora is showing any disruptive behaviours. While it mentions that some neighbours have seen Mrs Aurora wondering in the village, it is common that people know each other and they would either assist Mrs Aurora taking her to her home or contact her daughter (or any other known family member), so they could go get her when necessary. If/when highly disruptive behaviours occur, these are usually not being associated with “normal” ageing but likely with mental health problems, and as in many other countries, given the high stigma attached to and the lack of knowledge about mental health issues, it is likely that Mrs Aurora and her family will be stigmatised. As a consequence, her family may use all measures possible for restricting Mrs Aurora to going out of the house.

Regarding Mrs Aurora’s care, her daughter would go over to help her father care for her mother or with daily activities that she cannot do any longer such as cooking, cleaning, etc. It is also likely that, depending on their ages, Mrs Aurora’s grandchildren would help with “looking after” their grandmother, or with supporting their mother in performing daily activities needed. Depending on household size and structure, when support needed becomes too much, arrangements will be made so they all live in the same household where support and supervision of Mrs Aurora can be granted 24/7. Apart from little support from some close neighbours or extended family members, these rural communities have no infrastructure on care support services. It is likely that they never hear about dementia, or get specialised information about symptoms, its causes, etc., even when they might have a local term to refer people who develop dementia or its symptoms to. Unpaid family carers take up 100% of all needed care and support. Risk of abuse or neglect as a result of lack of knowledge and high burden on carers is therefore high.

Mrs B and her family, current experience - Mexico

Mrs. B is in her 70s and lives in mid-size town. When her son got married, she moved in with her son and his wife. For the last few years, she helped the family by looking after the grandchildren and doing housework and cooking while her children were working in the business they own. About two years ago, Mrs. B’s family became worried about her behaviour and memory. Now Mrs. B mostly stays at home. She does not go out unless someone of the family accompanies her. Mrs. B also stopped cooking, which she always enjoyed. Her daughter-in-law reminds her to take medication she needs for other health issues and helps with dressing. Mrs. B does not like being left alone in the house. Mrs. B’s daughter-in-law is worried about her hygiene, but having to look after the business, taking over the cooking and shopping for the family as well as making sure that Mrs. B is safe and well during the day takes a lot of her energy and so she postpones thinking about this aspect. Once a week Mrs. B’s son takes his mother to [church].

In mid-size towns/cities in Mexico, two factors are crucial in determining the possible pathways to care: income and affiliation/insurance with a social security institution. We assume that Mrs Beatriz had little formal education and did not have formal employment, therefore, she does not have access to any social security institution that would provide her with access to health care services, a pension, or other benefits. For this reason, her options will be to use public health services from the Ministry of Health or to seek services within the private sector. Because the case mentions the son has a small business, we assume their income would not be enough for them to access private services as there are few available and these are usually highly expensive.

When symptoms get too worrying, Mrs Beatriz’s son and daughter-in-law will take her to a public health centre (Ministry of Health) where she will be seen by a GP. Because there are no national health programs for dementia, what she receives will depend on the GPs knowledge or willingness to act, given that it is unlikely that the GP has had any formal training on dementia (maybe not even on older adult care). Dementia will not be diagnosed, likely dismissed as “nothing to do about it”, but if lucky, Mrs Beatriz could get referred to a specialist for a consultation. However, given this is a mid-size town, this will most likely be in a larger town/city, imposing large financial and opportunity costs to the family, such as paying for the consultation, transportation to the clinic and either her son or daughter-in-law missing work, on top of her already limited free time to care for Mrs Beatriz. It is likely that they do not bother with this unless Mrs Beatriz starts having severe mood or behavioural problems that they do not longer feel capable of managing.

Care for Mrs Beatriz will likely be done 100% by her son and daughter-in-law. While Mexico had a tradition of family-based values and strong filial obligation, where daughters-in-law were a big pillar of support, cases like this are common and children’s own responsibilities. Financial commitments and time restrictions as more and more often they work outside the home and have no help to care for their own children, make these situations extremely hard to handle. Frustration, physical exhaustion, and feelings of being overwhelmed are frequent and in extreme situations lead to mistreatment.

After a while, Mrs Beatriz’s daughter-in-law has a serious talk with her husband as she feels the care situation becomes unbearable, and they could decide to hire someone to help them. As they only have little extra income for this they are likely to either get domestic help to take up some of the cooking and cleaning of the house and freeing some time for the daughter-in-law, or some other person to “watch” Mrs Beatriz and help her in personal care issues like getting dressed, minding her when the rest of the family is out, etc. Being a mid-size town, the cost of hiring these persons would not be high, but, they will NOT be trained in or have knowledge of taking care of older persons and even less, of managing a person with dementia. Therefore, Mrs Beatriz’s son and daughter-in-law will continue providing all care needed until the end of her life, with the support of a paid, but untrained carer when personal care becomes too difficult for them to manage.

Mrs C and her family, current experience - Mexico

About five years ago Mrs. C started to become forgetful. Now, 75 years old, Mrs. C hardly ever leaves her room in her daughter’s house where she was moved when it became clear that she could no longer look after herself. The daughter and her granddaughter help her with dressing, eating, washing and going to the bathroom. The family has to make sure that food is not too chunky as Mrs. C has difficulty swallowing. It is difficult for the daughter’s family to go away together for the day as someone always needs to be around to look after her. The constant care needs in addition to her own family responsibilities also pose a strain on Mrs. C’s daughter has her own health issues. Mrs. C’s other children visit during holidays but find it difficult as she cannot always remember who they are.

We assume Mrs Catalina and her family live in a capital city or large urban/metropolitan area. Mrs Catalina moved in with her daughter when she started to present more complications and stopped being independent as they were worried something could happen to her. Mrs Catalina and her husband, who is now deceased, come from middle-high income families. Mrs. Catalina’s husband worked in the private sector and was affiliated to the Mexican Social Security Institute, IMSS (Mexican social security institution for those employed in the private sector), as part of his overall benefits and entitlements, Mrs Catalina now receives his pension (widowhood pension) and, as before her husband died, she has access to IMSS health services. She also has some savings. While Mrs Catalina can access health services at IMSS, when her daughter and granddaughter see that she needs more and more help and is quickly being care-dependent, they decide to take her to receive medical care within the private sector. They know that social security institutions often take a long time to schedule an appointment, or likely, they will not be referred to a specialist doctor, so they decide not to wait.

However, as it usually happens, they have to go through different specialist doctors in the private sector, before they get a more precise diagnosis. They start with a geriatrician who can do a cognitive screening, s/he then refers the family to a neurologist or geriatric psychiatrist for a full screening-diagnosis. As part of the diagnosis within the private sector, Mrs Catalina will also have high technology diagnostic tests such as an MRI and blood tests. The specialist doctor recommends the latest medicines to manage cognitive impairment/dementia, but does not give Mrs Catalina’s daughter directions or information in terms of likely symptoms as the dementia progresses, what to expect, and how to handle them, with the exception that Mrs Catalina should not be left alone, especially when eating, as she could choke, leaving Mrs Catalina’s daughter and granddaughter with huge uncertainty on how to best care for Mrs Catalina.

As Mrs Catalina’s condition progresses, her daughter feels more and more pressure and feels her own health starting to deteriorate. She has a talk with her siblings to express the need for someone to support her, but as no one is willing to help, they decide to use part of the pension/savings to hire carers for their mother. They are not able to find any nurses or carers who are trained or specialised in caring for older adults, nor for people with dementia, but they find two nurses that have had some previous experience caring for older adults and are well recommended by a friend as they used to care for her father before he died. While the two nurses seem very professional and caring, Mrs Catalina’s daughter is sometimes worried as there is no legal, health or professional association that will protect the family in case something goes wrong.

Mrs Catalina’s daughter and granddaughter will continue to supervise the care for Mrs Catalina., but will have more time for themselves. In one of their visits to the specialist doctor, another family carer tells Mrs Catalina’s daughter about a support group in one of the few Alzheimer’s/Dementia Associations, she tells them it is far from there, but they are very helpful in sharing information, and care alternatives, much more so than their physician.

Mr D and his family, current experience - Mexico

Mr. D lives by himself in a mid-size town since his wife passed away last year. His children have moved to the bigger city to work and can only visit once a month. Over the last few months Mr. D has found it more difficult to look after the house and himself. His son noticed that his father does not seem himself and is worried about him and what people may think if they see his father.

Because he lives alone and far from his children, Mr David depends on his neighbour, who he has known for some years now, to help taking him shopping or to do the shopping for him and who helps with some household chores, after some insistence on part of his neighbour. However, Mr David is worried as his neighbour has accepted a new job and is going to move in the next few months and would not want to ask a stranger to help him. High insecurity in some cities make even this support difficult as not many people want to be potentially exposed to strangers or dangerous situations. In addition, it is not usual for Mr David to ask for help as strong gender roles are usually present in this generation. This prevents him from asking for help, even while acknowledging that he needs it. If neighbours or some other friend do help, this will be the case only where long-time acquaintances have been made.

Mr David has access to social security services, as he worked in a public university and is now retired, so he also receives a small pension. He attends health services at some regular basis for follow-up and management of his high blood pressure, as well as preventive health programmes such as vaccination (i.e., influenza vaccination in November) (funded through his social insurance). In one of his follow-up appointments, the GP notices signs of cognitive impairment, and conducts a brief cognitive screening. He finds initial signs of impairment, so he schedules an appointment in 6 months with the GP and asks him to visit the assigned social worker at the institution. (Would Mr likely follow-up on appointment with social worker? would there be stigma associated?) The social worker will assess his social situation and his household arrangements, as she/he is worried he may soon not be able to manage by himself. The social worker asks if there are any family members that can be contacted, and Mr David refers to the only son that he feels looks after him. The social worker asks Mr David to discuss with him that he should not be alone anymore. Also, the social worker feels that Mr David would benefit from visiting one of the Gerontological centres that the institution has and gives Mr David the contact details of the one that is closer to his home. However, some days later, on considering this as an option, Mr David feels that the centre is too far from his home, he would have to pay for taxis to get to and from there and that he would not feel that comfortable talking to other people that he does not know anyway and decides not to go.

In his next visit, the GP sees signs of Mr David’s rapid cognitive decline and asks the social worker to contact the family member as Mr David should definitively not live alone anymore. The social worker talks to Mr David’s son, who in turn talks to his two sisters who both say they are unable to help him. One is living far away and cannot come back to their hometown and the other one says that she is already feeling overwhelmed with work, taking care of her children and, on top of it, having some marital problems, so she cannot worry with yet another problem; she tells him he is the only one who is still single so he should do this. While Mr David’s son does not feel very comfortable with that, he worries about his father’s condition, what could happen with his neighbours if he gets worse and ultimately, he thinks about what the social worker said about his father being exposed to many risks by living alone (falling, leaving the gas on, not performing personal care tasks, etc.).

Mr David’s son considers moving in with his father but is not realistic to think that he will find a job that is as well paid as his current job in their hometown, so he asks his father to move in with him. His father is reluctant, he does not want to move, that is the apartment he has been living in forever and takes a long time to convince him. Eventually, under the reasoning that it is best for him and his care his father agrees. With his father, he decides to put the apartment up for rent so that with that income and Mr David’s pension, his son can hire some paid (informal) help at home to help him with cleaning, cooking for his father and “watching” him, while he is at work.

Mr E and his family, current experience - Mexico

Mr. E has left his family many years ago to work in a big city. While he visited his family once a year, his children have become increasingly estranged and he has lost contact with them after his wife passed away five years ago. He lives on his own in a small flat. Mr. E finds it difficult to find his way to the shops and back, has difficulty remembering appointments and often forgets about eating.

Mr Eduardo is in what we could consider and extreme or critical case as daily support and care is unavailable. This is a large and densely populated area, where it is not common for people to know or look after their neighbours. He is estranged from his children and at this point it is unlikely that they will be in contact soon, after five years of not talking to any of them.

Mr Eduardo receives an unexpected visit one day from volunteer case workers from DIF (system for the integral development of the family, a public institution). Using administrative records to identify households with older adults who could need support as part of their social assistance reach out program, DIF identified and visited Mr. Eduardo’s household. On arrival, they conduct a rapid assessment on his living conditions and decide to sign him into their novel strategy on supporting older adults with cognitive impairment that provides them with a bracelet which containing a personal identification code and a telephone number for reporting, hoping to address Mr Eduardo’s concern with his increasing difficulty to return home. In addition, the volunteer makes a note to find out if Mr Eduardo could be a beneficiary of additional DIF programs, such as meals at community centres, because it seems he does not have much food in the home and when questioned, he says he has little resources and often goes without basic staple foods. He does not have a pension, nor any other income, so he is worried that with the little money he has, he can get by for many years more.

A few months later, coming back from doing some shopping, Mr Eduardo falls and is not able to stand up. He is assisted by someone passing who decides to call an ambulance as Mr Eduardo not only is not able to get up, but seems disoriented and is unable to give any references as to his name, where he lives, etc. He is taken to a public (state-level Ministry of Health services) hospital where he is diagnosed with hip fracture. Because Mr Eduardo cannot provide any details, the hospital contacts DIF and with his ID they identify him as someone in their registry and open a case with the social worker based at the hospital. After consultation with other specialists, they decide surgery has too many risk factors and stays for weeks in hospital for observation.

After 3 weeks, Mr Eduardo is discharged, after considering his socioeconomic condition and the fact that DIF employees were not able to contact any of Mr Eduardo’s children or any other family members, they arrange to send him in to the only care home available in the city of Toluca belonging to the DIF system.  The care home will assure Mr Eduardo has a place to live and his basic social and health care needs taken care of. However, these facilities are not equipped to care for people with dementia, care workers are not trained or have the basic competencies to care for people with dementia and in consequence, his dementia-specific care needs will likely go untreated/will not be managed.   Given Mr. Eduardo has no other place to go, DIF will make sure he stays in the care home until the end of his life.